Since it was a nice day, I took my husband to play golf. As I have mentioned in the past I basically do everything but hit the ball for him. Today, I could tell he was getting a little testy, but I just kept plugging along. When we came home he told me he no longer needs or wants help playing golf. That would be fine if he remember what club to use, when to putt or even where his ball was. I love to play golf, however, I have started fibbing when he mentions playing that the course is closed due to an outing. Any suggestions? Should I let him wander around trying to figure out what to do or try to help?
I don't know what's best - but I know that I'm tired of being embarrassed or having attention drawn to us so I'd probably not play golf with him. My husband told me to "shut up" in front of my elderly mother this past wkd. When he's grumpy nothing I do is right. He's yelled at me in Home Depot and at the airport - not something he would have done in the past but when he's tired or gets in a mood (who knows why?) he's unpleasant and I'd rather not be in public with him. I'd probably do as you are doing - distract or find excuses. But I'd also try to get away and play with friends for my own good. On the other hand maybe he'll forget he said "don't help me" and be cooperative next time. I've learned pronouncements don't really mean anything long-term now.
It sounds like both of you are at the stage where things get so difficult you end up getting isolated. It happened to me. I managed to figure out ways to get out by myself, but I don't have a social life anymore of any kind. We have lived here too short a time for me to have had long term friends and people don't realize how isolated I am. I still get waved at when they are on their way out to have a good time and I'm walking back from the mailbox (my big outing of the day).
I got isolated partly because my husband manipulated me in that direction, and partly because I wasn't aware it was happening. If your husbands can be left home alone for an hour or two, or a few hours, find a way to continue to see people. Use me as an awful example of what happens if you aren't paying attention.
I went through the whole golf gamut. We started out playing championship courses, then went to executive 9 hole courses. I was looking for his ball, started suggesting clubs, then started handing him clubs, then helped him stand in the right place aiming in the right direction.... We only played with a couple we knew since I got tired of getting one of the other players aside and telling them my husband had AD. I finally took him out on his birthday late in the day and we did not have a good time. I couldn't even get him to putt the ball...he couldn't figure out where to stand and how to hold the club. It just hit me how far down he's come in such a short time. He mentions golf sometimes, but it's too hot for him to play so I just humor him and say we'll play when it gets cool. Meanwhile, I found a ladies group that I can play with every other week (between support group meetings) and I love it. It's been a long time since I could just enjoy the game and concentrate on my play. It's worth every cent I have to pay the home care agency for someone to stay with him. He doesn't relaly seem to understand that he's not playing anymore. It just gets to the point where it's so tough on both..I think he knew that he couldn't do it and it was making for a very stressful situation. Don't stop playing...it's a wonderful release.
I agree find a way to enjoy the sport without him along. like Starling says, we can become very isolated if we attend to their every need and not remember what makes the caregiver happy as well. if i had to do over again, i would not have given up my 'me' time early on and would have hired help alot earlier than i did. divvi
OK, I need the answer to a question divvi. At what point did you hire help? At what point should you have hired help? At this point in my journey I can see no excuse for hiring help. I'm looking for what triggers getting help.
I know that when he needs help with bathing I'm going to need to get help because I won't be able to deal with the issues of forcing him into a shower, or even helping with the bathing most of the time. I've got some physical issues of my own.
Alot of my early denial of needing help was that I also didnt see any 'need' to pay someone to do what i could still do. guess what? the fact that you have NO social life is a trigger, the fact that you are in couseling for yourself because we are on the verge of breakdown, because you are even asking, its time to get at minimum a 4hr outing for yourself now! i waited wayyyy too long and thought i could do it all, yes i can do it all but it feels soo good to have someone else do it for a couple of hrs each week. my last aide i had started out 4hrs 1xweek good. then i progressed to 4hr x2wk/ and latest was 4hr on monday and FULL 8hrs on friday. i thought to myself i wont know what to do with myself out that long. another guess what? i went to the mall -and shopped or just looked for hrs!went to a new movie out on fridays, did lunch with a friend i had not seen in 4yrs!!! ouch that makes me shake my head too. and a manicure/pedicure another day out./half day of spa and haircolor..should i go on??? the things we did before AD set in whatever that is- a hobby, sport, girls day out, FAMILY taking my grandaughters to lunch and a movie/ vosthings i just didnt do anymore for years. even taking my 88yr old mom to a movie and lunch. its unfathomable that we let ourselves get to this point, but i am one who did and regrets all the yrs i 'lost' . my yrs of therapy told me just pretty recently that my 'mourning' days suffice at this point, and i can give myself permission to continue to live and not die each day along with my DH. it takes each one of us special times in our minds to work thru to get to this point, some longer than others. dont make it last too long. life goes on and i dont want to be resentful after all is said and done that i wasted all the better yrs of my life ONLY caregiving. so in answer to your question in a nutshell, get a few hrs now for yourself and dont wait like i did until i NEEDED help with the bath, etc, you need it now so you dont burnout early on. divvi
Well, we'll see what happens for us in the next couple of weeks. Last week I went off to Maine, leaving son and DIL in charge, and they did so many of the fix-up things that I just haven't had the energy to do - cleaning bookshelves, hanging pictures, straightening up. My husband was well taken care of (though he noticed that the house was full of strangers - our son!) but what really impressed me is that I finally could see how much I'd let things go to seed.
Now next week, when I go back up, we've got a CNA coming in every day 7-3, and our daughter will be in charge thereafter. We've had her come before, and he liked her, but she didn't have much to do because she came after he was up and dressed. Now she'll have to deal with that. I'm allowed to ask her to do sweeping and dishes and laundry and vaccuming, so I'm thinking I'll use her for that too. Now when I come back, we'll see what happens. Maybe I'll be more interested in having somebody come to do housework than to help me with the DH. But I think it's very likely that he'll be more solicitous of her than he is with me.
get as much help as possible be it family or hired hel, for the AD spouse or just plain housekeeping. every little load thats lights our own, helps early on before you reach the breaking point.
When DW got to the point that she could not be left alone, I started getting someone to "baby sit" (she resented it, but went along). Then, last month an Adult Day Care center opened up 3 miles from where we live. Now I take her there Mon, Wed, and Fri mornings while I go to the YMCA for some exercise. She seems to enjoy being there. Next Monday will be a test. I am on the board of the Day Care center, so will be leaving her there all day so I can go to the board meeting in the afternoon. Also, it will give me a chance to get a haircut and do some shopping. We all need a chance to get out and be ourselves, so don't hesitate to get help.
I don't think he would accept it at this point. However, one of our neighbors decided to take him fishing on Sunday. The weather is so hot they won't be able to go again soon, but I thanked him and asked him to please do it again, and I think he will. We have another neighbor who might be willing to take him off to lunch, and I'm going to give him a call and ask if he can do that soon.
At this point I can still leave him alone, but I don't know how much longer that will be. He keeps losing abilities and it happens fast. Today it became obvious that he no longer can handle money at all. He wanted to drive himself to the barber. I reminded him he no longer has a license and that I would take him anywhere he wanted to go. He allowed that to happen without a fight, but he wanted me to go in with him which I didn't do the last time I took him there. Now I know why.
If you can do it, the time to get help is actually before they really need it so they have time to get used to another person around. I was working full time so when he could no longer stay home by himself all day, I had to have help come in. This worked well for several months. When I could no longer leave him home alone even for a couple of hours, I extended the hours so I could get errands run. I was also able to have her stay with him when I went to the theater. The two of them did the vacuuming and dusting. They would also do the laundry. He helped her fold it (he never did that for me!). It was a big blessing to have the extra help as it enabled me to do other things that needed doing and spend more time with him.
There are two negatives to getting help. The first is what do you do if they or their replacement don't show up (went through an agency and had this a couple of times). The second one is that no matter how much you like them, they are in your space all day and you have to be comfortable with that.
One of the mistakes I did make was that I did not have her help out with his bathing/showers so that always was on my shoulders and when it became difficult to get him to bath, I couldn't ask her to help because I had not established that pattern. There were an awful lot of days where it took 1-2 hours just to get him showered and dressed.
About getting help – what do you do when you can’t afford help? We have no children, no family within half a day’s drive. The local churches are small, and don’t have any assistance programs. My health is deteriorating rapidly from stress and fatigue, and I can see the house sort of going to pot because I just can’t get to everything. I even talked to the social worker at the local Alzheimer’s Association office for help in finding assistance. After a couple of days of research, she told me that she couldn’t find anything, either. (Lots of assistance out there, but none if you can’t pay for it.) My husband is not close to going to a nursing home, and at this point it looks like I might make it to one before he does. I’m just so tired that when I sit down, I go to sleep. My rational mind tells me that I can’t go on like this very much longer, but what choice do I have? Time for myself? Respite? Those are hopeless dreams at this point.
I would love to have a couple hours to myself, even just going to the grocery store alone would be a treat. Every since my husband retired due to his illness, he thinks he should go everywhere with me. When our son was visiting from Georgia, I had to run an errand of course he wanted to go. As I told him he could visit with our son, he stayed, but was not happy. Last year he would be mad before my hair appointment & when I came home. Until this summer, our other son went golfing with him, however, I wouldn't ask my worst enemy to take him now. He thinks he can still play as in the past, well he can't.
Jan K- If you are not able to take care of your own needs because of your husband, perhaps it is time to rethink the nursing home option. I am convinced when I can no longer take good care of myself, my husband will have to go into some other living condition. There are places that are at different levels according to the pts. needs. I don't know where you live or your financial situation but something needs to be done. You can't sacrifice yourself for someone who doesn't even know your doing it. You will be good to no one if you don't take care of you. Is there no adult day care or any type of program for adults who need supervision in your area? You want to stay healthy because even when you can't take care of your husband, you will want to be able to make decisions he won't be able to make for himself. My thoughts are with you.
I know this is hard to hear but if i were in an area isolated where there was no immediate help, i would consider moving asap to a city so i would have access to state or govt help if i couldnt afford anything on my own. our needs change as well as the AD persons,including housing arrangements. or maybe you could sell if you own and use the money for an assisted living in another area. then if you spend that down you'd both qualify for medicaide i think then. you should consider moving closer to family if its feasible you will need alot of help along the way, mentally and physically from family and friends if possible. esp if you have medical issues of your own you wont stand a chance for long at this. its demanding on even those who dont have medical issues themselves. Jan you have family half days drive, you need to reconsider getting them to come and help out as best they can. and you should tell them you can t do it yourself and see if they can help you get qualified for assistance and go ahead and get him on a nursing home list before you actually need this. there are programs in the cities for people who cant afford any help. divvi
In our area we have the Area Agency on Ageing of W. Michigan (it's all over the country). Ours administers all kinds of sevices and helps get you connected. We also have a County millage for se4niors, to help fund care to let them stay in their homes. That's run on a sliding scale. They do all our paperwork with Social Services for his Medicaid Waiver (coordinates with his Medicare). He gets 9 hours of in-home help weekly. He gets a shower weekly (better than the never he'd do for me); the laundry gets washed and dried, the kitchen chores all done, the bathroomn cleaned and floors swept/mopped/vaccuumed as appropriate. Our helper also does the grocery shopping and brings it home, from our list. Because of my handicap, he even dries the floors after mopping. I cannot ask him to do anything "for me" but some things get done just because they make sense--all the laundry gets done, not just hubby's. After my Birthday, I'll be 60 and our case manager will put me on the list for the basic personal care from the Senior millage. 4 Hours a week--a shower (or 2), maybe some home cooking I can't do alone? Definitely I'll be coordinating my stuff with his to maximize our benefits. I may have a co-pay of about $12 a month(manageable) because my case will have to be based on all houusehold income, but worth it. I truly believe get any help you can as soon as you can so you LO can gvet used to it. Use what ever reasons--safety, hygiene-- to get the showers--ask for a male careperson. Whatever chores you can get done for you takes pressure off you. You may still be able to do your own dishes, but wouldn't your time be spent more wisely on things no one else can do for you? This week I balanced the checkbook, read a book, sorted and cleaned some storage; filed a complaint against his former service provider for things that prompted a change of Drs.; made the grocery list; and updated the "In Case of Emergency" forms I designed, for when he is left in someone else's care or goes away with someone else. In home help may not always be available for dementia care, but anything that relieves the overall pressure is good.
I contacted my aging agency. They call it something different in Pennyslvania, but it is actually the identical agency carosi was talking about. They asked me if I wanted a case worker to come to my home to do an assessment. At this point it was pointless after I asked some questions, but it might not be pointless in a month or two. I'll call again then and ask.
That caseworker would be the gateway to most of the same services that carosi was talking about. I would have to pay for the housekeeping and showering services, but I believe it would be on a sliding scale. And she would probably also be the gateway to Day Care.
My understanding is that EVERY county in the US has one of these agencies. In some places the Townships (smaller than the counties) run it, but even rural or near rural counties have one of these agencies. In a really rural area I wouldn't be surprised to find a couple of counties sharing one caseworker. My local Alzheimer's Association Chapter had the phone number, but I also found it on the State Webpage, and the Lehigh County webpage. By the way, my "local" chapter of the Alzheimer's Association wasn't the one in Allentown that is in the process of opening. My "local" chapter was in Philadelphia, the nearest big city.
If you are really rural, look at the nearest big city for services, or find the County Seat (Allentown in my case).
On the topic of the AD patient "not wanting the help to come in"....
That's what we around here call "TOUGH NOOGIES", the same response to when our two year old 'didn't want' a nap. There is a point, and it's dangerous, that you perceive all the LO wants and wishes as the rules for your life. The reason it is dangerous is that you will eventually burn out, or snap and go off on them. They can't go shopping, so you don't go shopping. They don't want to see friends, so you don't go see friends. Do you really want to let the inmates run the asylum?
So they don't want a babysitter. Well, life is hard. And just because they don't understand it is no reason to deny yourself the respite you NEED.
We hired a service, and when I met with the director, I was very clear that this was going to be iffy because the person had AD and wasn't amenible to being babysat. Surprise, surprise, the service is used to this! We weren't the only ones in the world with a crabby AD LO!
Our first provider didn't work out, and that was OK. The director told us it could take a few people to get a good match. Our second person was a DOLL. She had prior experience, and she came in and just tidied up, and gave my LO a wide berth. My LO was FURIOUS! She kept asking to come with me when I left. She really didn't want this person to come in. After a few times, they found some topics in common, and managed to get along. I won't say my LO warmed up totally to her, but heck, I get that treatment a lot too!
But I was out, had some breathing space, and was a much better caregiver to her for it. We caregivers spend way too much time deciding that something won't work when we haven't even tried it. Try it.
I wonder, trisinger, if it isn't harder for women to accept the help than for men. My husband has been totally happy to be tended by the CNA that's been coming in; he loves the attention and the cozzening that she gives him. And anything around the house has never been his responsibility anyhow, or rather some stuff was but he's relieved not to have the responsibility!