Caregiver Burnout [Sharon and Marianne's thread]
My husband is now in a program called P.A.C.E.. He goes three days a week to a center. This has been a real help. I work two of those days so I have one day to do all my errands.It is now difficult to take him with me to the grocery store, or just shopping. He sometimes gets agitated and does not go in the direction you want or will not get in the car when its time to leave. Well the other day I just went out of control and couldn't get myself together. I started having what I guess was a panic attack. It wasn't that he did anything worse than any other day it was me not being in control. I ended up going to the doctor the next day and she increased my zoloft . She also lectured me on the fact that medicine is not going to fix everything. She always talks about It may be time for me to give up taking care of my husband. I then talked to a social worker at the program my husband is at. She give me information on support groups and let me talk to the gals that work with my husband. I got some good info from them. Also observed him at the center . He is content there and has more freedom there . I attended a support group and was reassured that this burnout is normal. All of the other ladies have put their husbands in some type of home. But they are all older. My husband is only 66 he was diagnosed at 59. My doctor says he is in later stage or severe dementia. The situation is that he is healthy otherwise and is in good shape. He does not communicate very well. But he still goes to the bathroom by himself. He does not always take care of everything in the bathroom correctly. The only accidents have been when he has had a very loose BM. He cant clean himself up. I take showers with him and shave him. He eats by himself but sometimes needs encouragement. I cant imagine putting him someplace for 10 or 15 years. I know I just need to get my head straight. I did get more caregiver hours through the program. They will also provide care in my home 4 hrs. a week and an additional 8 hrs a month. I feel better now. But it was scary.
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Email8/9/11 Hi Sharon,
So good to hear that you are doing better. For some of us, we have to hit that brick wall good and hard before things sink-in. I have done that with my Mom and her Alzheimer's journey.
Great to hear you are learning to relax. I believe they are able to pickup off of our moods. After all, husband's seem to do that automatically even if there is no dementia involved.
And, I think that Carl still knows who you are. Its just that the dementia may make it more difficult for him to express himself to you.
I am glad that Carl and you are getting the extra help. And, family can be a wonderful support system. Plus, my faith in the Lord really helps me through the tough situations with Mom.
Wishing you and Carl the best. Although things will get worse, you have an excellent system set up now to help you through the rougher spots. Take care.
Nancy
I am really happy that you have received more respite time, Sharon.
How wonderful, that your granddaughters are pitching in and being so great with their grandpa. The time they are now spending with him will likely be memories they will always cherish!
We have several grandchildren of all ages who are drawn to their great-gramma in a most positive way. It makes them feel good to "visit" with Mom; which is awesome. It's just unfortunate she lacks the awareness of their loving intent.
Support teams are the best, aren't they?!
suzer
Hi Sharon,
Just checking in to see how you are doing and to let you know that I am glad you are doing better on the burnout score.
It is really important to make sure you also get the care that you need by getting those respite hours. It's good to know that you have done the paperwork and were able to get extra help and support.
It looks like you're able to manage with Carl at home, at least for now. Not everyone always goes to a facility, and whether that happens often depends on the amount of caregiver support you get at home.
The best way to deal with all of this, as usual, is simply by dealing with it one day at a time -- yesterday is over, and the future is not yet here, that's why today is called "the present."
:) Ann
It was good to read this thread about burnout. I have just gone through a rough time for a few weeks and was really feeling overwhelmed and frustrated. My husband is only 56 and has had AD for 7 years. I recently got him into a program for seniors, they had to make an exception to admit him into the program. He goes 3 days a week and it gives me a chance to catch my breath, to take a class, to run some errands, to have lunch with a friend.......... But taking care of him has gotten more and more difficult in the past year as the disease has rapidly progressed. He is a kind, gentle man with a dry sense of humor. But it is getting increasingly difficult for him to express himself. Hence he doesn't talk very much. We have always been best friends, and could almost read each other's minds. We could finish each other's sentences. Now I can barely understand what he wants to say. His words are so jumbled sometimes and he is so frustrated. He depends on me for just about everything. He bathes by himself, still shaves, but with supervision. He needs help with his clothes, cannot read or write anymore, can "do" anything like fix anything or even follow a simple direction. He often is depressed, despite his anti-depressant. My friends tell me that I am wonderful with him, patient............but I don't always feel that way. I often feel overwhelmed and lonely. and I want my husband back. I want the man I fell in love with. I miss that man who is gone. We still do a lot of things together, but I miss the fun we had. Everything now is such an ordeal. I worry that I'm going to lose him, yet when he follows me like a shadow I want to scream. I include him in decisions, yet I have to make the final decisions by myself. I miss my partner. And I often feel alone. My friends are wonderful in that they listen and include us in activities, but I feel guilty when I complain. I finally found a support group just last week at the senior center and it was the best fit so far for me. Maybe it was because they know me and I felt comfortable there. Going did help me get out of my funk. I just wish they met more often. That seems to be the problem with many groups. I find that monthly meetings are not enough to help us deal with what we do everyday of our lives. I know I have a long way to go on this difficult road, but I'm just trying to keep my spirits up and am doing the best I can with the hand we've been dealt. Thanks for listening everyone. Hope to be back again soon.
8/29/11 Hi Craft Lady and Welcome to the Group,
Although it is my Mom who has the Alzheimer's, I can identify with a lot of what you say and things you have to deal with. I lost my first husband when he needed a heart transplant which ever came.
Dealing with loosing that special life partner is oh so not easy. Then you throw Alzheimer's into that mix and you get a real witches brew.
Wish I had some magical words to help you deal with your husband's Alzheimer's and the care giver burnout that comes with everything else. I am glad you have found the support group at the senior center. Is there someone (maybe a staff member) that you could talk with in-between the group meetings? I too sometimes want a group meeting more than once a month. That is when I talk with friends, do some volunteer work, go shopping at Barnes and Noble, treat myself to special rich chocolate candy or ice cream, etc.
Is there someone who can come and sit with your husband at home for maybe an hour or two once a week to allow you some personal time away from home? Maybe just getting a break way, without having to do chores, would help you?
As far as the anti-depressant maybe not helping your husband like it should --- have you talked with his doctor about that? Maybe your husband's medications need to be modified.
You sound like you are doing good dealing with the hand you are being dealt. I can feel the love you have for your husband and the loss you are feeling as he changes and slips away little by little. Don't be guilty about telling your friends how you feel. If they are true friends, they will understand what you are going through and welcome the chance to be there for you.
You sound like a great and wonderful person still working on a special loving relationship with that special person in your life. Enjoy the good times that still are present and continue making some good memories together.
I love the way you still try to include your husband in decision making process. Even if he can't communicate it, I bet he still realizes you are keeping him a part of your everyday lives together.
Take care and let us know how things are going. Nancy
Hi Nancy,
Thanks for responding so soon. It felt good to get so much off my chest last night. And today was a better day. I take a painting class in the morning and I can leave Rick home for a few hours. I am usually gone about 2-3 hours and he will just sit and watch TV. he doesn't wander outside or leave by himself. I try to get him out with me when I return so he doesn't get bored. But today we went out for lunch and shopping at Home DePot, but I didn't feel well, so we came back home. Once again he complained about being bored. that gave me an opportunity to bring up the subject of increasing his days at the center. When I broached the subject last week, he was totally against it. But today when I said it, he didn't object. He seems to do well at the center. They keep him busy and finally have him participating in things. They seem to really like him because he's young and funny and smart. I try to entertain him, take him shopping, eat out, go to a movie. But there is only so much entertaining you can do. He still wants to do things but needs me to do everything with him. The men in our circle of friends don't seem to be comfortable with him alone, so they don't include him in things. So I think when I bring him tomorrow I will ask about getting him into the center 4 days a week. We are moving soon and this will help me too with the move. He can't really help me with the move, but at least I can do as much as possible while he is at the center and get him to "help" when we get back from there. You know it's funny, not ha ha funny, but funny, how we don't always appreciate what our husbands did when we were raising our families. And mine was good with the kids and the household, the "best fixer upper" the kids used to call him. But after we don't have it anymore, that's when we realize what we had, when it's gone. And that is what I think makes so many of us feel overwhelmed. If anything needs doing, it is us that needs to do it. And that leaves little time for ourselves. The director of the center is very good to talk to, and after last week's meltdown, she reminded me that she is there for me to talk to whenever I need to. I'm good now, but I will store that away for future reference. And I plan to return here too. Thanks for being here all of you and Nancy , especially for responding so quickly. It made me feel very welcome here.
8/29/11 Hi Craft Lady,
Sounds like you are on the right track in caring for Rick.
One of the things I like about Ann's Care Giving Forum is that we can come to simply let off some steam. Or, we can share part of our story as care givers and who our loved ones are. Often someone will chime in and reading their story helps me.
If you feel like starting a Topic dealing with you and Rick and your story, just go to the main page on Ann's forum. Toward the top on the left hand side, you will find a button named "New Topic". You can press that and start your own section.
Glad you found us and hope we can help you in the future. Good luck with your future move. It is nice to hear that Rick is open to adding another day the center. The more interaction he can have with others, the better for him.
Have a wonderful week. Nancy
Hi all.
Rick has been having a few good days at the center. It makes me feel like I'm doing the right thing in sending him there. They love him and keep him busy and interested, which is often more than I can do. Then tonight we went to dinner with friends and after that visited with another group. I tired him out!!! All in all a good day! Hurray!! And I got some time to myself this afternoon!! Just thought I'd share a good day, not just the bad ones.
Thanks.
Marianne
Hi Marianne,
I'm in complete agreement with Nancy, that you start a new thread for yourself and Rick.
You have a lot to share and we would like to support you as well on your and Rick's journey.
Sending Hugs of Strength your way.
suzer
Hi Marianne,
We are going to add your name to this thread, and make it officially yours, okay?
That way everyone will know where to find you, and to keep in touch with things going on in your life.
Speaking of which -- we need an update, because it's been a while; last I heard, you were going for a fourth day for your husband, and things were doing a bit better. I know life tends to be a roller coaster, but are your posts shorter because life is good, or because you're busy with things that are NOT so good?
Keep in touch and let us know! We're waiting to hear...
Ann
Hi Sharon,
So glad that this new plan of care is working out as well as it is.
A difficult time you have been enduring, yet you are doing a wonderful job despite your feelings of loss, with respect to your life with Carl.
Continue taking time out for yourself and am very glad you have retirement to look forward to, in April. (You may decide to find something to do to fill that time, for yourself though; don't rule out that idea).
suzer
Hi Sharon,
I would find out what color toilet seat they are using at the P.A.C.E. program and install one in your house.
That's first of all.
And then I would ask them what else they are doing around this issue -- are they taking your husband to the toilet at specific times of day? Or at specific intervals?
You are right that you have to coordinate as much as possible -- similar to coordinating behavior plans between school and home for a child with ADHD or any other issue.
The other thing I would advise is that you not retire just yet. Keep yourself in the loop; you will need it for your sanity, both socially and perhaps also financially.
Keep us posted,
Ann
Hi Ann,
It's been awhile since I've been in. We are getting ready to move, which in itself is a daunting thought. And I've had about a week of really tough going. It's up one day and down the next. The latest problem is that a bout a week and a half ago, before Rick went into the shower, he was trying to ask me something but I couldn't understand what he wanted. So he went into the shower and 2 minutes later he called me to come in. When I went in he was holding a handful of poop, not knowing what to do with it. I realized what he was asking me about was going to the toilet before showering. Hindsight is a wonderful thing! Well, since that time ( and this is the second time this has happened). he has become obsessed with going to the bathroom. He looks at the toilet like it's a foreign object. If the seat is down he doesn't know what to do with it. So I leave the seats up. But he asks me constantly should he try to go now. Or he ate lunch, should he go now? When should he go? In the store I have to ask him every half hour if he needs to use the bathroom. It's like having a 3 year old that you are potty training. So now he's paranoid about whether it's gas or he really has to go.
We are moving into a new house, a bigger house because I realized that if and when we will need someone in to help us, I have no room where we are now. In the new house the shower is bigger, so I can get in with him if I need to. And it gives us an extra bedroom. He is really excited about the house, but probably a bit anxious about finding things. But he can't find things now and we've been here 7 years. So a new environment won't matter too much. I've done everything I can to make it friendly to his use, motion detector lights for nighttime, for example. So I've also been busy with that. He is going to daycare 3 days a week, but I am going to try increasing him to 4. When he is home, he wants me to entertain him. But there is only so much entertaining I can do. Because it all falls on me, there is so much to do and much I'd like to do. I don't want to give up my painting classes or photography classes. So at least being in daycare 4 days will allow me some freedom to do "my" stuff.
Also a new thing last week, was that he can't seem to shave himself. He keeps cutting his face. So we got an electric razor but he doesn't know how to use it. So I am shaving him every morning too. It just gets so overwhelming sometimes. And I feel like I am always on the verge of tears. I try to keep up that brave front,especially around him. But sometimes when I talk to others the tears just start to pour out. I feel like I just want to cry and cry an endless stream of tears. He is only 56 and we were supposed to retire and enjoy ourselves. We worked hard all our lives and now, I live with a man who is barely a shell of the man I married 29 years ago. I feel so sad all the time.
I know exactly what you mean about losing our husband's companionship. We were best friends, could finish each other's sentences, enjoyed the same things. now he barely speaks anymore and when he does, most of the time it doesn't make sense. I try to keep him with me and busy as much as possible, but I can't entertain him all day. I just increased his daycare to 4 days a week. He complains about going, but is fine once he gets there. We have been in the process of building a house and are currently in the moving process. I still sent him to daycare because at least it was one less thing I had to worry about. He complained that he wanted to be involved and I reminded him that he has been included in every single decision we had to make. Sometimes I had to make the final decisions myself, but I tried to include him in everything. Then I told him that now he just has to give me time to do what needs to be done so we can move in sometime next week. I think he understood. Yesterday in my effort to include him I tried to get him to dry the dishes that I was washing. He couldn't even do that. He was so confused. So today we put him on garbage patrol, but even that was difficult. Something else I find difficult is that some of our friends have abandoned us as he has gotten worse. And that makes me sad and a little angry. I know it's probably because they don't know how to handle it, maybe it reminds them too much of their mortality.?? But I have decided to purge those people from my life because they just make me feel bad about myself. And I have enough to worry about without this trivial drama that happens. Fortunately the good friends that have stayed with us, really help and care about both of us. And I can talk to them, cry to them and say anything I want and know that they won't judge me. And God bless them, they are my trusted and faithful helpers in this move. I feel so lucky to have those few friends that do know how to handle the situation and help out whenever they can and are able to know when it is that I need their support. Well, I probably will be back in a few days, over the weekend. There is just so much to do and I'm exhausted. Thanks for being here ................As far as family goes, unfortunately our children live 1200 miles away and we only see them a few times a year. However our daughter came down for a few days this summer to spend some time with us. It was a good visit and she got a chance to see Rick in his everyday life. It was a rude awakening for her, but she needed it because she is so much in denial. He's only 24 and still misses her "Daddy". My son and daughter-in-law are coming for a visit next week and I am really looking forward to it. I haven't told him yet they are coming because he won't remember anyway. or if he does\ he'll ask me about it a hundred times. So it will be like a surprise for him. Unfortunately our kids are young and both have to come to terms with the loss of their Dad as they knew him. So it's hard all around. Because they've lost their Dad even though he is still here. Well, talk again soon. Hope your next few days are good
Marianne
There is no easy way of going through all of this. Milestones like retirement come and go and life goes on the same. I have cared for my husband for twelve years but only six of them since he was diagnosed with vascular dementia. So I have been used to physical changes before the mental changes became so obvious. This was a more gentle introduction I think though the results are the same. Now I have had to turn over that care to others.
Ray always was for keeping all the traveling we were going to do until our retirement and I am so glad now I insisted on a few trips once the kids got off our hands or I would have more regrets than I do. At least I have those happy memories to look back on now.
My advice is always just take one day at a time and do the things you can on the good days, stay at home on the bad ones. Life goes on whatever we do and we have to work with that.
Sue.
Hi Marianne, Sharon,
You're both facing some real challenges, especially with relatively young kids still in the mix and just barely thinking about retirement -- Marianne, not even there yet, in your case. A heartbreak, for you, I know, and major trouble with helping your kids learning to cope with the reality.
Sharon, it's important to think about getting some help at home, even with the P.A.C.E. program, because that scene you had with your husband not wanting to go your way could be repeated at some point. It is possible for him to stay home, yes, but you probably will need to get help. It's not something you can do on your own. Physically that is just not likely.
Marianne, I would like to suggest at some point down the line that you consider a group therapy session with your children, either during a time that they are visiting you (I know they live far away), or perhaps even if it is through a group Skype session (yes, that's possible nowadays also). There are some therapists who do e-counseling, and it may be worth looking into; the changes that your husband is going through are quite dramatic, and often children have great difficulty coming to terms with what's happening.
The wife and mother then has twice the job -- and pain -- of dealing with the situation as a result. Contact me through the webmaster for suggestions if you wish. I also think you are very wise to continue your photography and painting, which is one of the best ways to channel all the emotions evoked by what is going on in your life.
By the way -- folks who fade out are not necessarily people to dump. The problem is often that they simply don't know what to do, and they feel awkward about asking. Take the bull by the horns and let them know what they can do to help -- or if just coming over to say "hi" is what's most needed. They also might not know how they are supposed to behave when they come over, because they may not be sure whether their behavior will make things worse or better, so help them out a bit. Most of these folks just need a bit of education; don't toss the baby out with the bath water and blow away friends you might otherwise hang on to.
As regards the toileting issue, maintaining a regular bathroom schedule -- such as every half hour, or every hour -- may help him out a bit, and may reduce his anxiety and confusion over this, at least for a while. It won't work forever. But this is also what they do at the day care centers, and it may work at home.
Sharon, I am glad you have four days a week at P.A.C.E., because this is a place that your husband enjoys, and during that time, you are both in a positive space, relatively speaking. He is happy, and you have time to do the things you need. Work is going to be a godsend for you, because it means contact with folks whose lives are still intact.
Hang in there, folks. It's a tough ride, but the seat belt has plenty of notches. Ask Nancy; she's been tightening the belt for a while now. We're all here to help.
Ann
Im very grateful for finding this site. Im feeling a bit overwhelmed and it was comforting to find a place where other people are feeling the same as I. My MIL recently moved in with us, due to end stage liver failure. The Hospice nurse says her dementia will change daily due to the ammonia levels. I get frustrated cause I go day to day not knowing if its a "good" day or a "challenge" day. I've read most of the forum and Im finding alot of useful info. Thank you for having a site i can "vent" or get advice.
9/29/11 Hi tmkgp,
Glad you found us and hope we will be helpful for you as you journey with you Mother and her illness. Please feel free to come back and "vent" or whatever helps you.
My Mom is entering the final part of her Alzheimer's disease. We moved her into Hospice mid-April. If your Mom's Hospice group is like my Mom's, they have been a blessing. Not only do they provide wonderful care for my Mom, but they also help us.
Yes, part of the challenge with Mom is we never know who we will meet on any given day. But, I have learned that it really does not matter. Warren and I have learned to be in Mom's Alzheimer's World where ever she is at the time. "We go with the flow". I have found there are many other things that happen with Mom that are more of a challenge than "is it a good or bad day".
Taking Life one day at a time helps. Be sure to take breaks for yourself. We caregivers sometimes forget how important it is for us to take time to care for us. Look forward to hearing from you sometime.
Nancy
Hi TMKGP,
Welcome to our forum, and to a great support system. The folks here are very knowledgeable (I mean the readers) and have a lot of experience with end of life issues, because they are sharing the same journey.
The changing ammonia levels and other changing body chemistry in your MIL will definitely create different types of days for both her and you, affecting both her energy level and her mood.
There are some nutritional products on the market that might ameliorate some of the symptoms, but they won't cure the condition by any means, nor will they really halt the process. They may, however, make her feel a bit better, or improve her energy level.
One item called "Intra" -- it's an herbal liquid, like a liquid mineral / multi-vitamin syrup -- restores a sense of energy to people who need it. But not always, and not for everyone. You can jump to their website to check it out for yourself by clicking here. There are numerous others as well, many of which you can find just by strolling into your local natural foods store, or even into your local pharmacy. Be sure to clear the product with your MIL's doctor before she starts any supplement.
Reason: some ingredients, including some "natural" ingredients, can have a strong impact on your MIL's system, and can also have an effect on any medications she is already taking. It is absolutely essential to check with the doctor. "Vitamins" are still chemicals. Plants are made of chemicals too. 
Keep us posted,
Ann
Glad to be here. I am having a meltdown tonight. We have made our move into our new house, about 80% done. And a few of my friends have been a wonderful help, more than I ever expected. Rick seems to be adjusting to the new house and likes it. I have done as much as I could to make the transition easier. I got motion sensor lights for the bathroom than light up when he passes the doorway and they lead him to the toilet. He loves them and it's the first thing he wants to show everyone. But he feels useless. I tried to keep him involved, drying dishes, taking out trash.............but he is SO aware of what is happening to him that it frustrates him that he needs help doing simple tasks. And I am so busy trying to put things away and still bringing things from one house to the other, that he feels neglected, not in the true sense of the word. But he wants my attention and I can only give him so much, while trying to finish up what needs doing, so we can put the other house on the market. We had a wonderful weekend, our son and daughter-in-law came down and we had a great time with them, but once they left, he fell into his own self pitying depression He began to cry and then I did too. I told him I try so hard to keep that brave face on for him and others, but he'll never know how much time I spend crying when I'm alone. I'm doing the best I can for him, but it just doesn't seem to be enough. I wish I could make it better or make it go away, but that isn't going to happen. So I try to deal with it bravely. In the meantime, we are both frustrated and devastated by what is happening. If he was in LaLa land, it would be so much easier, at least then he wouldn't be so aware. But he is, and that makes it even harder. I keep praying to god for strength, but sometimes I get tired of being strong. and I just want to have my normal life back. I feel so overwhelmed sometimes, that I just don't feel like I can keep going on. Then after I cry and catch my breath, I put on that brave face and march on like a good little soldier. I'm just so tired, mentally, physically and emotionally. I'm just spent.........I'll try to be back sooner, now that we are somewhat settling in. Thanks for being here.
Marianne
Hi Marianne,
Everyone has those days, and caregivers of loved ones with dementia have more than their fair share of them. One of the things you're going to need to do at some point is to find a way to take a break -- not for an hour, but for a day, or two or three. Or even a week.
Without your husband.
Things are going to get a lot tougher before they get easier, as you know. Every caregiver needs respite on a regular basis in order to survive. Respite comes in several 'flavors' --- short-acting (a few hours), medium-range (a day) and long-acting (a week). But it is essential in order to avoid burnout, which is deadly to both body and soul.
Long-acting respite is usually easier to arrange earlier in the process, because as things get tougher, it is harder to get away for any real length of time. I understand your husband's frustration -- who wouldn't? And I understand your pain. It's a nightmare no matter which way you cut it. But the best way to deal with that nightmare is to constantly reinforce to your husband the necessity of always focusing on the positive points in the day. Just steer away from the negatives and if he begins to take a dive, redirect the conversation as fast as you can. As the disease progresses, that process should get easier -- a sad but useful effect of the dementia. There are a few silver linings that come up once in a while.
Hang in there, and keep writing. The venting will help, and we're listening. We care.
Ann
It's been a rough week. We are still in the process of moving and Rick seems to be adjusting to the new house. He loves the view, the gardens, the animals out back. But he needs and wants to feel like he is helping. I have tired to include him as much as possible but just getting him to take a box to the car is a huge task. God bless him, he tries, but it makes my job so much harder. We have had a decent amount of help actually moving things, but once it is all here, the rest is up to me. He can't help me organize things, so he sits and feels useless. At least during the week, he is going to daycare and that makes him feel good and is better for both of us. I went to a social worker associated with the Alz. Center here and she was wonderful. She spent a good amount of time, didn't rush me, listened and offered suggestions. One of which is increasing him to 5 days at daycare. I am going to try to do that in another week or so. Also I asked her if he would benefit from some counseling with her. So We are going together this week to see her. Then she can evaluate his communication skills and see if he could benefit too. We can go to see her as often as we need, once a week, more if needed, less if necessary.........I felt such a relief when I left her office. I felt listened too and understood. so many people have no idea what each and every day is like. Fortunately a couple of really good friends have been supportive and that helps,and maybe just the toll of the move is too much for me right now. I am hoping that once we settle in completely, things will improve and we'll get back some feeling of peace and tranquility. I guess I didn't anticipate that moving would be such an ordeal, of course with all the responsibility falling on me. I underestimated the time and energy it would take and how exhausting a job it is. I decided that tomorrow is going to be a much need day off for me and we are going to spend as much time together having some relaxation time . Maybe that will revive me and re-energize me and give us both a much need uplift!
Thanks, for being her. I'll be back again soon.
Marianne
Hi Marianne,
Moving is one of the most stressful activities on the planet, not only for families contending with dementia, but even for "regular" folks!
However, I have to tell you that you were VERY smart to get it done now, before Rick's condition deteriorates any farther. Even on a good day, transitions are not easy for folks with dementia, and the more impaired he becomes, the more difficult it is going to be for Rick to deal with changes and transitions. This move, since it had to come, was much better accomplished right now.
The place you describe sounds absolutely stunning, and the house sounds as though it is set up perfectly to accommodate your husband's needs -- and yours, when it comes down to the brass tacks of caring for him.
I also agree that a five-day activity week will be much better for him, and for you, than to have him just hanging out around the house doing nothing, with you trying to figure out how to entertain him, with no tools available for that purpose. The day care folks are set up for that purpose; you are not. Counseling also sounds like a very good idea, if not for Rick, then at least some sessions for you, Marianne, to help you get your equilibrium back.
Sounds like things are slowly straightening out. It's hard, and it's probably going to get harder, but at least you have now put into place those tools you need for dealing with the challenges you will face. You'll be okay, and we're here to support you too, don't worry.
Keep posting, keep venting, and keep the faith.
Ann
Well, the move is almost completely over. If I had it to do over again, I'd do it one fell swoop, not dribs and drabs. But we are starting to see the light at the end of the tunnel. Rick is adjusting well, but he has such a hard time expressing himself. So often I don't know what it is he wants to tell me. And he gets so frustrated. We went to see the social worker together last week, followed by a visit to his dr. and it went very well. The social worker, Nancy, was excellent with him, asked him a lot of things to get him talking. When he got stuck he'd look at me for answers or words. We have always been able to finish each other's sentences , so often I was able to help out. He seemed to like having someone to talk to, to express his feelings. She must have gotten the same feeling and felt he was communicative enough for him to benefit. So we are going to try a session together every other week and a session alone for me in between. Thank goodness, between the stress of the major move being over and seeing Nancy and the monthly support group meeting, I'm starting to feel a little better. Feeling more like my old self. not as stressed and exhausted in every sense of the word. My brother- in-law is coming down this week. He has a place not too far from us. And even though he was not here for the move, he did volunteer to stay with his brother while I take a few days away with the girls. So I am going to take him up on it. I'm going to try 2 overnights and not too far away, so if he needs me, I can get back easily. And with Rick being in daycare everyday, he won't be overburdened. So yes, thank goodness things have settled down some. I'll be back in a few days and let you know how things are going. Thanks for being here. Talk again soon
Marianne
I got a very welcome break this week. My brother-in-law stayed with Rick while I got an overnight trip with 2 girlfriends. We didn't go far, but it was far enough to give my head the space it needed to recuperate from the stress of the move. We took a nice leisurely drive about an hour from home, rented an efficiency on the beach for the night and relaxed. Of course it rained all day, so no beach and sunset for us. But we shopped and I didn't have to worry about losing someone or someone knocking something over in a glass shop. We just had a normal day of girls' shopping and laughing and eating out!!! It felt so good to just be normal for a little bit!! The second day we explored some little towns and went through the craft exhibits and stores, had ice cream and just emptied my head of all the debris clogging it up!!
Rick did ok while I was gone. He kept asking where I was but was satisfied with the answer "shopping". He got a little agitated when the morning bathroom routine got a little mixed up and out of sequence. But my brother-in-law handled it well. and the rest of their time together went fine. Next week we are traveling up to NY to see our kids. This will be our first trip in a few months, so it should be interesting to see how it goes. I'm trying to pack real light so I don't have to handle too much luggage by myself. Wish me luck!!
Well, off to this whirlwind I call life. I'll be back and try to catch up with everyone's threads next time round! God bless you all. You are in my prayers.
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8/6/11 Hi Sharon
Glad you are feeling better. Yes, caregiver burnout is common. There is so much stress involved in watching your loved one declining and changing.
Hopefully the support group will help you. They help me. First, I know that I am not alone in this long stressful battle. And, I find out how others have learned to cope. Then, it helps me to share my story about Mom and even vent some of the frustrations and anger about what is happening to her.
Can you have someone come in and help you at the house with your husband? Maybe having someone bathing and shaving him will already help you.
I have been to many Alzheimer's support groups in the last 3 years. To me, it does not matter the age of the patient or care giver or whether the loved one is at home or in a care facility. We all share a common bond of trying to live day to day knowing our loved one is slowing dying from some type of dementia.
As to your fears of your husband will be in a facility for 10 to 15 years, no one knows how long the process takes. I wish you the best in finding the right answers for you and your husband. It is not an easy journey. Please remember to take care of yourself.
Nancy