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Topic Daycare anyone? Go to previous topic Go to next topic Go to higher level

By Emma On 2010.05.08 05:52
I'm wondering if any of you are using adult daycare for your loved one with Parkinson's and if so how it is working out and how your PD patient feels about it. I desperately need to have a break from caregiving and right now I'm not getting it. A while back I took my husband to tour a local adult daycare program thinking that perhaps he could spend a half day there every week so that I could have some time for myself. He hated it. He feels like he doesn't belong there and was depressed when we left. I really don't want to force him to do something that he doesn't want to do and I understand how devastating it must be for him to think that this is what he's come to, but I really need this break. I feel like we're in this together and that we both need to do what we can to make it easier for the other, which is how I approached the idea with him, but he doesn't see it. In fact what he said to me was that he didn't want to be a burden to me and that maybe he should consider assisted suicide. He has trotted that little ditty out before and it used to scare me but now it just pisses me off because I realize that it is guilt/manipulation.

Anyway, I like the idea of daycare because they have a nurse on site and because it gives me the option of using my time to go out and do something, or to just be at home by myself (a little luxury that I miss a lot). It's also cheap, $10.00/hr.

The other option is to hire someone to come to the house once a week to stay with him while I take a few hours off. The going rate for that is $20.00/hr. but he doesn't want to do that either.

He thinks that he doesn't need to have anyone watch him, and it's true that there are times when he would probably be OK by himself, but those times are very rare. Most often he can barely walk or move and needs assistance, there are times when he slides right out of his chair and can't get himself up, he falls and he forgets that he has a medical alarm pendant around his neck, he gets very confused and/or paranoid, he leaves the stove on, he forgets to use his walker or cane, he plugs up the toilet and it overflows and needs to be cleaned up asap (which he can't do) before the water seeps into the finished basement and causes $$$ damage. He just generally needs help in the bathroom. He needs help with his meds. Also, he is not able to use the TV remote or the telephone without assistance. Sometimes his BP drops suddenly and he collapses on the floor. There's more, I could go on but you get the picture. I don't know, and neither does he, when the good days will be. I want to keep him home, as opposed to going to assisted living, but in order to do that I need a break once in a while. The fact that there is something that he could do for me, and won't, is starting to make me resent what I do for him. So what do I do? I guess I know the answer, I just do it. But I really want it to be OK with him. How have others dealt with this? Insight or advice from the patients out there?
Thanks. Em

By lurkingforacure On 2010.05.08 07:19
Wow, what a great post emma, I'm so glad you shared how you feel and I think it is very, very natural and universal to caregiving.

I remember something I read here, that especially with dementia involved, PWP become like toddlers, and you have to treat them accordingly. Heck, even without dementia, as we age we become like toddlers, my own mom has begun exibiting that type of behaviour....but let's not go there.

What I mean to say is that with kids, you are in charge and you just have to do what you need to do. I know my littlest one never wants to go to bed. Some nights there are tears, but I have to get him in there so he can get his sleep. Same with eating his peas, taking a bath, you get the idea. I would do what I needed to do for my husband to be able to keep him home as long as possible.
If that means he has to go somewhere he'd rather not go for a few hours a week, so be it. Perhaps if you tell him the choice is going to a nursing home/assisted living full time or going to adult day care a few hours a week, he'll understand.

Sometimes I think when you have been superwoman for so long, nobody gets it when you start to crap out and need a break! But it's reality, and what can you do? You have managed so perfectly for so long, he probably doesn't think it's really that hard, so why would you need a break? Let him know it IS hard, it IS 24.7, and that you simply cannot manage anymore with the current regime. Something's gotta give....and a few hours a week is a very small inconvenience to be able to stay in one's own home the rest of the time.

You are very wise, and already know what you need to do to stay sane and able to continue to care for your husband...and I hope you don't feel guilty because you are human and need some time away from things. We all know if we don't take care of ourselves, we cannot possibly take care of anyone else. Please take care of yourself.

By Emma On 2010.05.08 08:08
lurkingforacure, thank you. I needed the support. I do have a tendency to feel guilty and the tough love thing is always easier said than done. One of the big problems I have in dealing with the dementia is that, like everything with this disease, it waxes and wanes and changes it's presentation. Sometimes it's very clear that the dementia is present and that is actually fairly easy to deal with. But then there are times when we can sit down and have what appears on the surface to be a fairly "normal" conversation. The problem is that it's not. Even though at those times he is speaking clearly and expressing himself clearly, his thought processes and judgement are still off. But I sometimes don't recognize that and get caught up in thinking that I'm talking to the "old guy". And that is where the frustration comes in. It's confusing. Anyway, I know you're right. Thank you again.

By Pearly4 On 2010.05.08 08:48
We "forced" my mom to go two days a week -- she hated it until the end, but only when talking to us. Whenever anyone else asked, she liked it, loved it, enjoyed some of it, but the bottom line was it was the best thing we ever did for (or to!) her. She gained strength, found that she had more in common with those people than us, enjoyed some of the activities, found out she was very aware of political activities and became their resident expert, all the while having many if not all the same issues you describe at home. There she helped push others in wheelchairs, set the table for lunch, folded laudry, etc., and a good center will help make him feel like he's part of it too, not just another disabled person being taken care of. She often wished she could work there part time instead of attending!

Should say - we tried home care as well. There's a time and place for both or either, but we, as caregivers, felt more supported and got more assistance from the day center staff than the home care staff. Being taken care of at home by a stranger was more like being babysat to my mother, while going out to the day center was much more tolerable. Though I found the home care staff not as skilled or reliable as the Day Center.

I worked and got away from it for a while each day -- my husband was at home and the two days she went to the Day Center was a mental health break for him as well as being a benefit to her.

By shirley On 2010.05.08 09:40
Emma, I could have written your post. Everything you describe is exactly the way it is for us. My husband does the very same thing to me and I, like you, feel guilty but know I need a break. We've talked about daycare and his reaction is the same as your husband's. I think I will just have to do it at some point. I think you know that too.

By caregivermary On 2010.05.08 11:44

I haven't tried the daycare yet but I have been looking at it. However, I have had care in home for my husb. I've used male neighbors who have things in common with my husb and that has been successful. I hired caregivers for longer periods 4-5 hrs and for the most part that has worked. The neighbors keep my husb more entertained than the caregivers. Keeping PWP in their own surroundings is good but it is not always possible to make that happen.

I need to visit one with my husb and find out how he feels about it.

By hubb On 2010.05.08 12:10
Emma, I know where you're coming from - I could say ditto to almost everything you wrote. I did get outside help for every Friday and my husband did not want it or like it at first, but I persevered because not only did I need time to myself once in a while, I had to do all the errands and grocery shopping, etc. I am usually tired out by the time I get back home, but at least I've had time off. Now, my husband looks forward to Fri. and will get up and pick out clean clothes (which I usually have to make him do), shower & shave before she gets here. which I usually have to make him do and of course it always requires my aid and attention We learned a lesson this past week as an old friend was in town - hadn't seen him in 25 years as he has been living in Australia and met him and his new wife for lunch, but I soon saw that it was almost more than my husband could manage..when he couldn't hangar fly with them and tell sea stories, I knew this was now another social outing we would have to give up. It just took all his strength and stamina and I could tell his friends were thinking "this isn't the guy that we knew". So I sure don't want to embarrass him and it makes me sad that we can't do simple things anymore together. When this old PD gets a good hold on them, there is no telling from one hour to the next what to expect and I think that is what wears us out so much - you can't get much of a routine going as it all depends on how they feel right then. We have an adult day care in town but I haven't tried it because so far it's easier on me and better for him to have my Friday lady come in. She makes him get outside with her (she's a retired nurse which is a plus) and makes him walk around the yard and sits down and talks to him, always fixes him a good lunch (which is a treat for me ) so I found a real jewel there. She charges $15 an hour and is a bargain at the price. We want to keep him at home as long as possible as there are days when he likes to putter in his shop, but I go check on him ever so often because of his postural instability and he's liable to fall or he'll do something that creates more problems - recently, he thought he was filling the weed eater with gas and instead it was windshield wiper fluid - I know he's trying to be helpful, but that gets pretty discouraging too and you hate to be nagging at them all the time as that does neither of us any good. He hasn't pulled the suicide talk on me, but I know that's pretty common among PD patients and the neurologist has often asked if he has thoughts along that line. I can tell he's depressed at times - and who wouldn't be - but I still don't want more meds for that so that's another thing I keep an eye on. Life isn't a barrel of laughs for either of us these days but we have 2 great sons who call him regularly (they both live far away) and keep us up on all the grandchildrens' activities and that cheers both of us up . When someone said getting old isn't for sissies, that's the truth and mix that with PD and it's REALLY not for sissies. It's so great to have this forum to vent in and to read other's problems and realize you're not the only one going thru this - maybe misery loves company but it's reassuring.

By MJ-Camano On 2010.05.08 14:09
Thank you for bringing up another tough subject, it is so helpful to know others are dealing with the same issues. I am still working away from home 3 days a week, thus my husband had been home taking care of himself. Last summer when I arrived home from work he would be very agitated and ornery; thus I hired a "companian" for him 2-3 hours a day. I had to explain that she was there for him, could take him places etc. He accepted that and his mood improved. We have no adult day care in our area, or I would sure be using it as the thing I want more than anything is to have some time in my house by myself!

I now have had to progress to a caregiver coming into the home 7 hours a day, and my husband has actually loved this arrangement. She waits on him, has a sense of humor, and is so very helpful to me (totally does all of his clothes, bedding, helps him shower, take short walks, fix his food, etc.) This arrangement is for the 3 days that I am away from home working, but I still must come straight home after work and have no time to do other things.

We live in Washington state, and I was able to get 24 hours a month of Respite care; the Senior advisor at our local Sr Center helped me complete the forms. I would be sure to check with your state and see if this would be available to you - they even guided me to the current caregiver.

My husband gradually accepted this, we (my kids & I) just explained that it was a person to spend time with him, but it would also help me as I was having to take on more of the household tasks. His one comment was: "I must really be getting bad!" We just said no, it was the PD that was slowing him down more and a little companionship would be helpful; he really had no choice in the matter as she was already hired. He now loves the extra attention.

Thru all the classes I have taken, books I have read, counselors I have seen, we must take time for ourselves - no matter if it is just an hour aday for a walk, book reading, or bubble bath. I know we would like more than this, and I wish I had the answer for finding more time for ourselves - but other than running away (previous topic) we most likely won't make that choice. I so much miss being able to join women's groups, going to lunch or dinner with my girlfriends, seeing a movie, taking "girl" weekends, and being able to have my grandson around. My children and extended family make it possible for me to get out at least once a month with friends, I am so thankful for this.

Bottom line - please take care of yourselves and ask for help, we deserve it!!

By parkinit On 2010.05.09 18:40
I'm glad this subject was brought up as well! My husband accepts a lady who I've hired several times through our local Eldercare agency. She comes to the house when I have to be gone for the day and drives, mothers, and basically assures my husband is safe while I am gone. I always explain it to him this way - I don't want to come home knowing he has fallen and no one is around to help. I want to know he will be safe so both of us can enjoy ourselves when I have to go somewhere. He seems to accept this as well. It appears, from other posts as well, that the going rate is between $10-15 - depending on the depth of the care.

I don't work, but I agree, we all need a break. I will be visiting my daughter out of state in July and I will be hiring the assistant my husband is familiar with to come in and help him throughout the day. We are toying with the nights since my husband has trouble walking at night, but haven't come to a conclusion yet on this. Has anyone had this situation where you are gone throughout the night? He tends to stutter step most during the night times and has to get up several times a night.

By lynn On 2010.05.09 19:00
emma- You could be me. It's hard when the patient goes one way and then seems to get it together for some time. I finally had to tell my husband that he had to go to daycare twice a week. I had to have the break. The problem is that they don't process information like they use to. My husband went to day care and I explained how important it was for him to socialize and have activity to keep going.

By MJ-Camano On 2010.05.09 19:13
The night time care is a problem for me, I would like to go away for a couple of 3 day vacations; this most likely won't be possible unless I can have my kids stay thru the night. I do know that you can hire someone for 24 hour care, but I'm not quite comfortable doing that yet. Due to the incontinence problem, it is hard to take him somewhere to stay with relatives for a few days - just a few relatives are okay with helping dress, bath, and change the depends.

It would be nice if there was a place everyone in our situation could meet, we certainly all have alot in common; also our spouse could have alot of people to relate to!!

By Emma On 2010.05.10 07:41
Thank you all for your support and advice. I have already taken your suggestions and brought it up to my husband again. I am now using the term companionship instead of "care", he seems more accepting of that. He liked the idea of hiring a neighbor so I had him dictate an "ad" that we will pass out to all the guys here in the condo complex. As far as the daycare center I told him that if he tried it and found that he didn't fit in that maybe he could help out while he's there, be sort of a volunteer. Miracle of miracles, he agreed to try it. I'm also calling our local senior center to get some names of caregivers. I told him that he could do the interviewing. So, I'm now cautiously optimistic that I will get some relief. The next hurdle will be getting away overnight, as many of you have mentioned. Incontinence and nighttime mobility are problems for us too, and too much to expect a friend or relative to deal with. Not to mention the embarrassment factor for my husband. So again, thank you all! I don't know what I would do without you.

By parkinit On 2010.05.13 18:26
When you spouse is at the level you mention, as mine appears to be around the same, it is difficult to travel (together). We recently took a long weekend trip and I was exhausted when we came back. I usually end up loading and unloading all luggage - I'm okay with this.
He froze up while we were at a show and I walked him out - shuffling - while people were looking on with extreme concern and a few even offered assistance, propped my spouse up against something, raced to get the auto, parked it as close as possible, ran back out to assist him to the auto and then scurried home - all with others looking on with utmost concern. We also tried to eat out. Again, he froze up, we took our food to go, again the concerned looks, again I raced to the auto, parked it close, ran to get him out to the auto, and we headed on to our next destination. No, I don't need this stress. In addition, he wet on both of the beds in our room at the time and seemed totally nonplussed by the entire episode. I don't think we will be taking any more trips. He had a pair of Depends, but refused to wear them at night.

By MJ-Camano On 2010.05.13 19:36
Parkinit - I so understand your feelings. We have taken a trip to Hawaii every year as our daughter lives there. I was unsure if we could do it (what to do about depends on the airplane, hallucinations, airport shuttleing, anxiousness, etc.) With much anxiety on my part we were able to make the trip but I'm sure this is the last. All my children were there, thus we took turns with the daily assistance - I couldn't have done it without them.

A couple of weeks ago, we needed to go to a family reunion, over 100 miles away, decided it was best to do a day trip and my daughter went along to do the driving. The packing for an overnight trip and all the stress hardly make it worth it.

When my husband was first diagnosed, I discussed the future with a friend who's father had PD; she said they just tried to keep life to their previous normal schedule as possible. I have tried this for 3 years, and the time has come to slow it down, keep people coming to our home for visits, on good days going to lunch or dinner or a drive, and thank goodness it's spring and we can sit outside in the warm sunshine!! Good luck to you....

By dkleinert On 2010.05.14 01:12
Emma - we have been thru the same thing - exactly. My husbands OT that he loved who used to come to the house 3 times a week after his knee surgery suggested he come to a retirement center that she works at one day per week. Our eye doctor had suggested it a year or so ago because her Mom goes there and at that time my husband would not hear of it. But when Christine, the OT he loved, suggested it - he was all for it. So I checked into the cost. $176 for a month of 1 8 hour day per week. They take them on field trips, do all kinds of activities, play games, watch movies, etc. The group is 28 in total. Have to commit to a minimum of 1 day per week for the entire month at a time and you pay by the month whether he ends up coming or not.

FORTUNATELY they offer 2 free visits before you sign a contract. He was all ready and very eager and excited for that first Wed. When we arrived no one was there - it was during the winter and it had lightly snowed the night before. We found out by asking lots of folks that this program runs with the public school calender, and if the public schools are closed, so is this program. He was so depressed and angry (like those children we keep referring to) that he would not go back no matter how Christine and I tried to convince him.

It is because of all of you here on this site and your suggestions that we have Sandra who comes in 2 days a week when I am at work for 4 hours each time. She is paid by our county Council on Aging. We don't even need to pay for her services unless we can afford to. It is a great program. My PD husband likes Sandra, and I know that he is cared for, eats at least one meal and takes his medications during those 4 hours she is here 2 days per week of the 4 I am gone 9 hours each day. Check into that also.....maybe your county has similar services. It was actually a social worker for the Physical Therapy and Occupational Therapy group that came to the house to evaluate my husband who told me about that service, and actually made the call to the right person so they came out for a site visit..

Have you checked into respite care services for your county or state? Your PD husband does not need to know it is called "respite"......YOU need the time alone once in really do, Emma.

I so hope you can find some relief soon......hugs to you.

By parkinit On 2010.05.14 09:59
MJ - Great info! I'm so glad I found this web site. I searched for "respite care" for my state and found they offer vouchers to anyone who is providing care for anyone over 60 - regardless of income. I wouldn't have known about or thought about this without your posting.

Thank you for wisdom and guidance...

By LOHENGR1N On 2010.05.14 13:03
This might be a good time to remember the resources here, if you look at top of page, click Home. At top of home page, click resources. There is a great site for benefits you might be eligible for, scroll down to senior information and click the Benefits Checkup. It has information on all kinds of programs and help with care and med's, it even provides addresses and phone #'s for offices nearest you home to contact. Take care, best of luck and hang in there.

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