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Topic Day Care Blues Go to previous topic Go to next topic Go to higher level

By Emma On 2011.01.08 05:37
I'm wondering if any of the PWP that you care for go to a day care program and if so how it is working out. I have been trying for about a year to get my husband to go to the local program and he has resisted. His doctor talked to him about it and encouraged him to try it a few times. He agreed so earlier this week we went for a visit and an evaluation by the nurse and got him enrolled. He is scheduled for a half day visit on Tuesday. While we were there the nurse took his blood pressure and it had shot up to 209/98, due to anxiety I'm sure. His normal BP is about 120/75. He was clearly distressed about being there, even just for the eval and he REALLY does not want to go back on Tuesday.

The problem is that he looks at it as a step down, that it's demeaning and feels that he doesn't belong there, that he is much better than the other participants. Most of them have Alzheimers and cognitively most are worse than him, but not by much. Physically he is more impaired than most of them and at 68 he is probably a little younger than most of them. I truly understand his feelings, his reluctance and his anxiety about it. On the other hand, I believe that it would be good for him to get out and socialize and have some new experiences in a different environment. I think that there is the potential for him to improve physically through the movement classes they offer and to keep his mind sharper by being challenged with new and different activities.

Obviously there is a selfish component at play as well. I desperately need a break. Right now my sister comes for three hours once a week so that I can get out to do errands; go to the store, the bank, etc. A couple of weeks ago I managed to sneak in a haircut while I was out, my first since June. I am grateful to have her come and I could get her another half day (I pay her by the way) but, this is hard to explain, I want time alone in my house. I want to be able to read a book or work on a project (I have a years worth of paperwork right now that needs sorting, shredding and filing, I have tax stuff to get ready) without being interrupted every five minutes. I want to be able to come and go or have some friends over. My husband doesn't understand that and I don't think he is really aware of how much I do to take care of him, our house, our lives. I'm feeling really guilty about wanting him gone for a while each week, especially when I see the distress on his face when we talk about it. He actually had tears in his eyes when we left there the other day. I'm so torn, I'm not sure that I can do the tough love in this situation. I'm not sure that I can force him to do something that he is so opposed to. On the other hand I think that my needs are important too and we all have to do things sometimes that we don't want to do. When I had a job I wasn't always happy about having to go to work but I went every day because I had to. I'm not always happy about being a caregiver either but I do it because I love him and he needs me to do it.

I feel like I am disappearing sometimes, my life is all about his Parkinson's and there is very little left of me. I understand that he is trapped by Parkinson's, he can't get away from it, he can't get a break from it. I get that and I am truly sorry and saddened by it, but I didn't cause the Parkinson's, I can't cure it and I don't have it. I need a break. I need him out of the house once in a while. Am I the only one who feels that way? What do I do? By the way, this is a case where I would welcome patient perspective as well.

By Pearly4 On 2011.01.08 05:50
Brings back so many memories -- we FORCED my mother to go for the evaluation, for the 3 day (1/2 days) trial period and heard, thought, saw and felt all the same things you describe. In the end (and it wasn't very long) she found she loved the place (though she never admitted it). Her strength improved, her balance improved, her outlook on life improved, she stopped sleeping all day, she ate better, she had people there she could talk to about things that she was interested in instead of feeling like people were only being polite. She became their political expert and later talked of actually wanting to volunteer there or maybe work there part time so she could "help" the others more as she spent a lot of her time pushing others in wheelchairs, helping them at meal time, participating in special events, etc. She became the caretaker of the parakeets kept for the day center and even now the cage bought and paid for by donations at her death is marked with a plaque in her memory!

Toward the end, she alternated two and three day weeks and we found the help, input and support of the staff our own life saving force second only to that provided here on the board.

Stick with it -- its much like forcing your child to go to school - they hate it, but you have to make them go. In the end, they hate the long summers away from school and can't wait to get back! Try telling your husband he may be able to help others, it worked for us!

By Emma On 2011.01.08 06:48
Pearly, I appreciate your reply so much and in fact I did tell my husband that if he is more capable than the others he could offer to help them with the games, etc.
I truly believe it would be good for him even if he doesn't see that now. He used to go to the regular senior center here in town for an hour or two here and there but he just couldn't keep up and that discouraged him. At this program he would be able to have some successes. In my dream world he would go two days a week for about 6 hours a day. In reality I would be happy with even one day. Again, thank you so much.

By lurkingforacure On 2011.01.08 08:30

You have given so many here such good advice it saddens me to see you worrying over this. I know the pain you are feeling and that makes it so very hard.

To me, you have to send him. And it's not entirely selfish on your part, yes, it would help you out tremendously, and that's a side bonus. But the REAL reason, honestly, I think, is that he needs socialization and classes and you simply cannot provide that at home.

I remember, as we all do, sending your children to preschool/kindergarten that first day. None of them wanted to go, yet after they did, they loved it (for the most part, mine still complains). I could not offer or provide my kids all the activities, projects, socialization, playground equipment, etc., that the school does if they stayed at home.

The place you are talking about is no different. The more I read about PD, the more I realize that PWP need to fight the very strong urge to sit and do nothing. They may be more comfortable that way, but they are falling deeper into the "use or lose it" syndrome we all face. I force my husband to get out, ride a bike, walk, as often as I can. It's hard, yes, but in the long run, he will do better. And feel better, which is so important to the stress/pain feedback loop.

I would simply explain to him that he NEEDS to go, for his mental and physical health. And tell him it can be a trial period: if after say, six months, he hasn't gotten anything out of it, you can re-evaluate. I've read six months is the minimum time a PWP needs to participate in a new physical activity before any benefit can be seen or felt. This may alleviate some of his anxiety.

Does anyone here have a PWP who participates in a book club? I think that would be such a great thing: they read a book, analyze it which keeps their brain working, and then discuss with others, which gives them socialization. Maybe he could join a book club and/or start one at the facility as well?

By Emma On 2011.01.08 09:05
lurking, thank you too for your support and advice. I agree that it would be good for him, I can see that, others can see it but he can't see it. Just being in a different environment where not everything is familiar and known would help to stimulate his brain. Unfortunately because of the dementia he can barely read anymore, nor can he comprehend so in his case I don't think a book group would work but it's a good idea. I do know that the program has someone from the history department of a local college and/or someone from the historical society come in once a month and do a seminar/discussion. It's a great idea since people with dementia usuaslly have good long term memory and that kind of activity would be great for him. It's just so hard to see him so despondent over it yet I know that you and Pearly are right, I need to make him go. Thank you for being there, as you always are.

By Reflection On 2011.01.08 09:51
I agree that it would be best for him, as well as for you, for him to go to the program. I suspect that while the first few days might be rocky, within a month both of you will be glad you did it.

One thought - might it be possible to have one or a couple of the men who are currently in the program over for a beer (I almost said "tea", but these are guys) - perhaps watch some football, or whatever? It might be good for the other guys, it might provide a break for those guys's caregivers - and most importantly, it might make your husband much more comfortable if he knows one or two guys in the program when he walks in the door. You might ask the program staff who might be suitable, who might have some common interest.

Finally - I don't think you are at the "burnout" stage yet, but if you go on the way you are, I you may well get there. So I'm posting the list below only in part for you, but also for whomever reads your post, feeling similarly stretched. Burnout is very real, and it is easier to prevent than to overcome. Once in it, it's hard to get out, and that will be quite unfortunate for you and for your husband. For our generation, it sounds self-indulgent and like rationalization to say you have to take care of yourself - but it is so true. Note the list of burnout symptoms below is based on work burnout - but similar concepts apply to caregiver burnout as well:

Symptoms of Burnout:
The following symptoms may indicate that someone is silently suffering from burnout:
Inability to concentrate
Suddenly increased sensitivity to criticism
Becomes excessively defensive or angry when questioned about work performance
Shows exhaustion unrelated to actual lack of sleep or other specific issues such as a recent illness or a new baby
Spike in sick days
Regularly complains of feeling as if coming down with an illness
Exhibits noticeably less desire to get involved in new projects in areas that formerly were of interest
Antisocial behavior
Shows little or no interest in group activities
Often acts irritable
Inability to cope with daily duties
Expresses sense that everything is spinning out of control

Burnout is a condition that develops gradually as the person's creativity and effectiveness erode into fatigue, skepticism and an inability to function productively because their commitment fails to produce an expected result or reward.

the individuals most likely to develop burnout are well-educated, self-motivated and attracted to demanding jobs where the risks and rewards are high. This person is also, of course, the type who enjoys fostering change in an organization and adds value to a business.

'Have I done enough?

Constantly having to justify what they do they can get worn out

Having constantly to placate various constituencies that are protective of their own turf can be disheartening.

This problem can be acute where you do not have the control or ability to produce a result that is acceptable to you. Feeling frustrated and underappreciated is a sure route to burnout.

Stress is when you're always tired and maybe feel like you're coming down with something or feel like everything is spinning out of control. True burnout adds a new component to these symptoms: you begin to avoid other people or start to respond to them differently. You are grumpy all the time.

[Caregivers] who feel that their contributions are valued are much less likely to burn out. Burnout is born of frustration, a feeling that no matter what you do, it isn't enough.

By Emma On 2011.01.08 10:06
Reflection, Good idea about the visit with other participants, I'll check into it.

The article on burnout was a good reminder for all of us. I don't think I'm there yet but I am acutely aware that as the disease progresses it is a very real possibility and that is why I am trying to take steps now to accommodate his changing abilities and my level of stress and fatigue. My goal is to have him at home as long as possible, hopefully to the end but I know that I can't do that unless we continue to make adjustments that help both of us.

By the way, when I was working we used to say that you can't burn out if you were never on fire. That's true I think, the more dedicated you are, the more you care and put effort into something the more likely you are to stress, crash and burn.

Thanks for the insight.

By MJ-Camano On 2011.01.08 12:40
Emma - Please be persistant in getting your husband to attend the daycare. I too, for several years just wished I had a few hours alone in my own home. I was never able to work this out, but with help of children & family; I have been able to continue working and having a little socializing. We have no adult day care close to us, but we visited a couple about 20 miles away; as my husband has progressed he seems to think this socializing with others would be good for him and I have also had to express to him that my health is important also (I recently found our that I had a small stroke last May.)

So you might try to stress to him the importance for you to have some down time to keep you healthy and happy so you can continue to care for him.

By Emma On 2011.01.08 17:30
MJ, I'm glad to know that I'm not the only one who wants some alone time at home. I'm glad that you have help from family that allows you some time to have a little bit of a life of your own too. My husband and I did have another talk today about the daycare (I felt empowered by the support from all of you so I brought it up) and the importance of keeping me mentally and physically healthy and he said he would try it, but that could change tomorrow. Has your husband actually gone to the daycare yet?

I am sorry to hear that you had a small stroke. Are you OK now? Take care - Em

By sannph On 2011.01.08 20:25
You are definitely not alone in your wishes for time alone in your own home. That is one thing that I really miss since my husband quit working. I do have help for 2 1/2 hours a day, but I use that time to run errands etc and he and the attendant are here. The day care sounds like a great idea for both of you! And the advice for trying it for a while and then evaluate is great. When I worked in daycare (for children), we always told parents to allow the kids 3 or 4 weeks to adjust. So go for it!

By LOHENGR1N On 2011.01.09 00:27
Emma, I say got for it. We Patients can at times (most of the time) resist change's. Wether changes to surroundings or schedules whatever. Kind of ironic when you think of the havoc this disease creates in our lives and everyone else's lives around us. We all are in a constant state of change from hour to hour and day to day patients and caregivers alike. Maybe that's why we resist changes to whatever little routine we think we can maintain. Sometimes we just have to be pushed into trying something different which might turn out good.

Reading this post reminded me of one such situation in my life. When I went to get my service dog Squire. I got there late the night before training started and it was a chore to get there past the anxiety of the unknown (we had to live and train there for 2 weeks). I got there and panic...what am I doing? This is bad....but I'm too tired and med's schedule isn't right to drive the long drive back now...I'll leave in the morning! In the morning I decided to wait till end of first day then leave. Second morning ....I'm going to ride this out for a couple of days. Third morning all thoughts of leaving were gone my knuckles were dragging, my back almost putting me in a wheelchair but we all were suffering and misery loves company so...To make this story short it was one of the best decisions I've made. So yes Emma I say give it a try.

On a sad note Squire passed last Sunday and I bid farewell to the best friend, caregiver and companion ever. I never regretted the training and work it took to become teamed up with him. I miss and will miss Him, thinking of him in His prime before old age and feebleness set upon Him but then still He gave me His best till the end. Even now He's helped me to encourage Emma and Her husband to try something new. In that I can find comfort. Take care, best of luck and hang in there! ......Damn God's got a good dog now.

By Emma On 2011.01.09 04:08
Al, thank you so much for the encouragement to forge ahead and for your reflection on resisting change. Your input means a lot to me.

My heart is breaking for you over the loss of Squire. Such sadness to lose a wonderful companion, friend and helper that you shared so much with. I don't know what to say except that he loved you well, served you well and now he is at rest. I know that you will keep him in your heart forever and find peace and comfort in your memories.

I wish that I could give you a hug my friend. Take care.

By Reflection On 2011.01.09 07:24
Dear Al, I am so sorry that Squire has left you. He did sound like a wonderful companion and help, and a true friend. A Squire for our shining knight, Lohengrin.

By karolinakitty On 2011.01.09 09:59
Emma ... go for it.... I think it's a great idea.... I don't want to punch the male ego here or be called a female chauvinist pig (lol) but i believe guys have a harder time adjusting to new routines than women. We ladies like our "social" invites and tea, and so on. Most men would rather hang in the shop, read a good book, watch a good game or do some fishing; and most of these activities alone. So when left to their own activity schedule, wouldn't get out as much, if we didn't give a push.

As in a former post, regarding planning ahead, we have discussed this issue too. There are no adult day care's closer than 50 miles from us soooooo he has one picked out, but don't know if i will be able to get him there....(country living is great, most of the time)....My guy doesn't want me to get over stressed and burnt out, as he knows how this can happen. Right now i am no where near that, but he still insists i get out and away from the house. We are fortunate that our neighbors come over and visit him. At first he felt like it was a death watch, everyone coming over to see how bad he was getting, but now it's social time in the man shop. He has his own shop (12 x 30), he plays with his wagons, and the neighbor guys come over to see what demented thing he came up with now.....He even converted a radio flyer wagon(s) into a hearse. It kinda looks like the car the "Munsters" used to drive. He says it's kinda fun having dementia, you can mess with people and no matter what crazy thing you come up with you can blame it on the dementia and everybody just smiles..... I've mentioned this to others, but i think losing some of his cognitive issues has brought out the creative side in him. I couldn't find any studies on this, but, maybe that is something to consider for folks. Doing something creative as opposed to trying to do the "norm".......

Al, so sorry to hear about Squire..... As for Reflection's shining knight.... a bit of a song for Squire..

In short there's simply not
A more congenial spot
For happy-ever-aftering than
Here in

By lurkingforacure On 2011.01.09 10:44
Oh Al I am so sorry to hear about Squire. There is nothing to compare with losing a beloved pet. My vet recommended that we plant a tree when our first dog passed away from bone cancer, and we did just that. It's a beatiful memorial to the animal that you shared so much with. If you dont' have a yard, I would ask your City or neighborhood about having a tree planted in a park (or somewhere nice) in Squire's honor.

Our daughter was little when we lost this dog and a friend recommended a book for kids called "Dog Heaven". It is a wonderful story of how all dogs go to heaven and the fun and happiness they have there. It made my daughter feel better, thinking of our dog romping all day long with other dogs,, free of pain and all of his body working properly, of course no leashes or collars, and treats everywhere. I'm much older but I think I liked it as she did.

By parkinit On 2011.01.09 16:11
Emma - your bravery in bringing up this subject and trying to follow through on it has encouraged me to put out a few feelers myself. I think this would help my spouse as well, so I sent a note to our local Eldercare contact before I even finished reading your post.

Thanks for spurring me on as well!

By Emma On 2011.01.09 17:25
parkinit - I'm happy to have a "daycare buddy" with me as I pursue this. Let me know what you find out and how it goes for you and your spouse. Em

By LOHENGR1N On 2011.01.10 23:56
Thanks for the kind heart felt condolences for Squire my friends. Reflection, I must now search for another helper lest Lohengrin becomes the Knight of the Sorrowful Figure ;) again thank you my friends.

By Reflection On 2011.01.11 09:26
Gosh, Al, a swan boat may not be practical. Swans have a nasty temper, and they are hard to housetrain. So I commend you for finding Squire instead. A worthy companion, and while he can't be replaced, I do hope you find a good helper soon.
Knowing the legend, I know I can't ask your name, because I don't want you to disappear - but I wish I could beam you some swan stickers to put on your cane. ;-0

By Emma On 2011.01.16 05:35
Update: My husband went to the daycare program for 4.5 hours one day last week. He said that he didn't love it but he didn't hate it as much as he thought he would and that he would be willing to go one day a week to help me out. Yea! He loved the lunch they served so he had me read him the menu for this week and he picked a day based on that. Whatever floats your boat, at least he's going and this week it will be for a full day! Thank you all for your encouragement and support, especially you Al. Having someone with PD say go for it helped my guilt a lot. This is such a huge relief to me and I've been in a better mood all week because I had that time alone at home.

By LOHENGR1N On 2011.01.16 08:40
Good for both of you Emma! Glad to have been of some help. I hope your husband picks up another half or whole day here and there also, as it seems for the time being He's enjoying it. Take care, best of luck and hang in there.

By karolinakitty On 2011.01.16 09:58
Great Emma, I guess in this world 4.5 hours can seem like an eternity and just refresh us enough to continue... I hope he can really enjoy things there and get more into the grove. Heck it may grow on him. You know how sometimes the ol' grass is always greener may actually work for you.... he may like their lunches better, so want to go more days...

By parkinit On 2011.01.16 11:58
Emma -

I'm working on PT for spouse right now before the Daycare, but good for you on getting him there and he found something he "liked" about it - the FOOD. Keep us posted.

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