We have had very good friends as guests from out of town this week. Arrived Wed. and left Sat. DH was great until Fri. night. We went out to dinner and he asked me who the people were sitting at our table! I told him they were our very best friends who were visiting us. He said he didn't know who they were and he looked so sad. I talked to him about a couple other things for a few minutes - then he was fine! It was like it never happened. He has been fine since. It probably lasted only about 5-6 minutes.
vickie its like that, comes and goes. at least he was ok later. we have to expect stranger things to happen when out of the comfort zone sometimes. divvi
I've had the same thing here a couple of times. We have these very good friends and today he asked me when the fellow had died. I explained that he was still alive and that he maybe was thinking of someone else who had recently passed away.
He, too, got this really sad look on his face and then just walked away.
I don't know if he recalled our friend yet or not.
This is really getting to be quite sad. I choose not to be depressed about it but it is getting harder to maintain that attitude. Wonder how long it'll be before I collapse.
Last week's blogs were about finding a life outside of caregiving that gives us fulfillment and focusing on what is good in our lives. It sounds like you could use a big dose of both.
Yes, sadly, our spouses are going to continue to decline; there is nothing we can do about it; but we CAN do something for ourselves, so we don't "collapse" or wither away with them.
Get some respite (check the blog- Oct.8/9 - still on home page- on how to get respite even if you can't afford it), and do something YOU like to do. Get involved in a class, a club, a group, something that gives YOU pleasure. It is important for your mental and emotional health.
Mawzy, Joan is correct. Get yourself some respite and get involved in something now that you like and will continue. I was with Claude nearly 24/7 the last five years of his life. Then he was gone and I was adrift without anything specific to do or to go to.
I did have my visit to my sister in Seattle in July to look forward to. After I came home, I did start several things, but lost interest. I think the majority of my grieving started then. I went back on an anti-depressant which has helped and I'm slowly getting involved again.
Take care of yourself physically and emotionally so you can take care of your LO.
Just how do you do that when your husband has reached the stage when you can't quit leave him alone anymore, but he is just weeks from doing regular 2 hour walks every day? He may have stopped doing them, or maybe not since he has done several this month.
Because he still can take care of all of his own life issues, getting dressed, bathroom, eating, etc., there is no excuse for bringing anyone in. I tried day care last year. That might be appropriate, but maybe not. And I felt so much guilt about the whole idea of two days a week, that I ended up not doing it then. Two days a week is the minimum. And it was almost too expensive for me to do it anyway. We don't qualify for a sliding scale on anything so it is full price for everything.
He refused to go out to lunch with the "guys" one of the two times they tried to give me a couple of hours of respite. And he refused to go out to lunch with our daughter yesterday. It is very likely that he might refuse to go out to lunch with me as well. I might just be back to cooking again pretty soon.
I'm open to suggestions on how to get myself some respite. Unfortunately it might just end up as a "yes, but..." situation. Most of the things people have suggested in general so far won't work for me.
You and I are in the same boat, Starling. I don't know how to get respite either. He has refused to go out with one or two friends who have called to ask him. Only time he isn't with me is: when I get my haircut; I do go to work 1-2 hours twice a week; when I go to the bathroom (LOL); but otherwise, as we say, he's glued to me like velcro.
but sometimes they DO change and are willing to have someone come in, for instance, when earlier they minded. Just like they never ate sweets and suddenly look for them constantly.
Mawzy, I'm really glad to see you back posting = how are the "assistive devices" for YOU working out?
Hey, Vickie, You're lucky. mine even has to go with me when I get my haircut. LOL Does your DH stay alone when you go to work? I couldn't leave Jean alone. He'd be out looking for me. He goes to daycare the three 1/2 days that I work. And, like you, the bathroom is the only place to be alone - so far, anyway. I've alway been very independant so I really hate having him with me every where I go.
I keep giving you my advice (having been there, done that) and you keeping thinking your husband is the one who gets to make the decisions!!!! They have Alzheimer's. It doesn't matter the stage, or their capabilities. They can not stay alone, therefore hire a baby sitter! Did you stay home until your children were old enough to stay by themselves? Did it matter if they wanted a baby sitter?
What is the worse case scenario that would happen if you had an in-home careperson come in for four hours? Are you afraid that they would harm the caregiver? or would they get upset with you? or that they will sulk in their chairs? You have reached the point where you need to put YOU first!!!!! Of course you take their desires into consideration, but not to the point of 100% sacrifice. If they were themselves, they wouldn't demand it of you and you know it. Please don't lay a guilt trip on yourself.
It would have been so easy for me to lay a guilt trip on myself after leaving my husband in the Hospice Hospital the first time. I worried all night long the first night! And for them to have cut off his mustache of 48 years!!! And sleep for four straight days except for meals! But, thanks to my friends here, I did use it again, and everything worked out well the second time.
So, don't stop after the first time. They will adjust. Please don't ask them. They are toddlers in your husbands' bodies. You are getting a sitter so that you can have respite. You can ask for a man.
I had a friend who told me that she hired four daytime caregivers, and he ran the first three off after one time. They refused to come back because he kept telling them to leave, that he didn't want them there, that he wouldn't eat what they prepared, etc. The fourth one stayed.....she told my friend upon her return home from her morning out that after she left, the husband said to her "whatever she's paying you, I'll double it if you leave" LOL
Now, he was a hard one! But she perservered and succeeded, because she knew she had to do it. You ladies have to do it too. They will adjust, if you insist, and you should insist.
Mawzy, you need someone who can take you out, while someone stays with your husband. Your situation is a little different. If I were there, you and I would go out, run errands, have lunch, sit in the park and visit, while someone watched your hubby for you.
Everyone, I'm sorry if I came on too strong in my earlier post, but I love all of you, and I want you to have the respite care you so desperately need! See what 5 days of freedom will do for you! You lead the charge to try to help your friends!
Starling, dear friend, I learned something while my husband was in hospice...the CNA walked beside him for hours! So, if your husband wanted to walk, the caregiver (male) could walk with him, and read the paper with him, and you could be free for a few hours!!! Try it a couple of times, please!!! I want you free too!
Carolyn, I'm on a high from having respite...we get ourselves into such a hole while caring for them and trying to meet their every need, forgetting that we have needs to be met as well....
Oh, and another thing....our local Alzheimer's Association has $500 grants for caregivers to apply for each year and if your husband can't be left alone, you will get it, to use for respite care, so please check with your state's Alzheimer's group for these grants.
I contacted Seniors in WV and they put me in touch with one of the satellite offices and I talked to a lady about any things I would be eligible for. Medicaid is out for us. She said I would be eligible for 16 hours a week in-house respite and the cost would be on a sliding scale depending on how much income husband has. For instance his Medicare income and any other income I would estimate him having. They do not ask how much money you have in the bank, etc. It is entirely based on Alz. the patients income. My SS or income is not counted. If his income is up to $20,000 a year I pay $1.00 an hour, then there is another step up and the cost is $3.00 an hour. They can do light cleaning, bathing assistance, food prep, etc. while they are in the home. I believe it is called FAIR or something like that. So, look on the Internet for your State's Senior services and find out what you are elgible for. The Nurse is coming out this Thursday to explain it more and I will post more info. after that.
I'm jumping on this bandwagon too. I've been saying for ages, even if your LO doesn't need or is not cooperative with personal care help now, get some help in to break them in to the habit of having someone else there besides you. Insisting on doing all the household chores yourself--sweeping, mopping, dishes, laundry, etc. is just plain dumb when your time needs to be focused on all the other stuff we have to do. A helper can just as easily monitor his leaving and returning from a walk, and how long it takes, and chores will be done while you have respite and recharge. I've been guilty of this too. When told I had 4 hr. respite time per month to be used for ME, I responded, "Thank you." but I thought, "What the H*** am I going to do with that?" And I am not to use it for Dr. appts or the like. Those will be covered separately. I'm learning and it's Great! I will not do what I did 3 years ago, when I spent 13 straight weeks inside this house with DH, unless you count the single step out when the dog's rope was stuck and needed untangling. There is a way for me to go shopping, to the library, maybe take a class. I have options. And I come back refreshed. Don't call the person you get a sitter. They are a helper. Later, when you LO requires assistance it will be an easier adjustment if they aren't locked on to just you for every little thing all the time.
Thanks for the inspiration, Carol. I've got helpers coming tomorrow to assist with cleaning our guest house in preparation for my Domino Divas coming on Wednesday for our monthly "play day". Then on Wednesday while they are actually here a helper will be here 10-2 to hang out with DH, see that he has lunch, tend to chores, etc. On Thursday they are coming again to help with the overdue cleaning of the garage. He hates these folks but he's either going to get used to them being here or else! We are fortunate to have a little $$ put away and lately I'm spending it on enhancing our lives -- well, maybe MY life since he seems to be unwilling or unable to let anyone enhance his. I have vowed that his dementia will not claim ME.
Thanks to all of YOU for being here each day when I'm struggling.
Today the LTC nurse came to evaluate G, at the door when she was leaving, she gave me a "look" and told me that I absolutely needed to get some respite. I guess i should have looked in a mirror then..wow..must have been bad!
I have Andrew. Heaven knows how long I will HAVE Andrew, but while it lasts I'm happy. We had always kept some of my husband's pension income (about $1000/mo) set aside to use for car maintenance or purchase, or buying appliances or other large purchases, and for renting the house on Monhegan. He also used it - a lot - to buy math books, the ones I'm trying to dispose of now.
But the money did accumulate, and so if what I do doesn't exceed the monthly income, I feel comfortable with using it. Hence Andrew. From an agency, twice a week, 8 to 1. But because it's private pay, there's no real limit on what Andrew can do for us.. and he likes to be kept busy. So while I'm at the zoo and shopping, Andrew is cleaning house (mop the kitchen, vacuum the rest), lugging the books around, and mowing the grass - even went home and got the power mower. He's really assuming responsibility for stuff - he'll bring the mower over Friday to mulch the leaves... And of course he does the whole get-L- up bit which takes about an hour and a half. Shaves him. Cooks for him.
Andrew is 25, still very much into going to clubs on the weekends, etc. Got himself a new girlfriend. This can't be his life forever, I know that, but for now I'll just enjoy!
Carol i agree with all that bluedaze said and you are a marvel.:)
Weejun, enjoy your fun on wednesday and its a very good thing to get DH accustomed to help early on. he will eventually succumb so dont give in! your happiness is his happiness :)
kathi, i hope you do look into the mirror and ask that person to take you out on the town and some respite time! yall should get along beautifully at whatever you decide to do. call someone in ASAP! we wont let you off the hook about this until you post you've had some time out.!
The thing that has kept me from bringing in a "baby sitter" is that until about a month ago he was out walking for 2 hours every day. But it occurs to me that if I get someone who is male and strong I can warn them that he might go out, and that the thing to do is just go out with him.
I guess I'm not going to yes, but all of you after all. I'm going to do some thinking and then do some calling. I might get the caseworker back here for advice or maybe just a phone call. Even though we don't qualify for help, they will send me info on the services they like.
Oh, I do get out--3 times a week I go to the pool for water aerobics. I'm gone about 3 hours. DH stays by himself. He watches TV or takes a nap. I feel guilty about leaving him but if I don't get those exercises, my body gets to be in pretty bad shape.
I don't know how long he'll be able to stay by himself. If I don't fix him something to eat before I leave, he doesn't eat. The other day I was runnng late. I fixed his meal but as I wasn't there to tell him to eat, he didn't.
I'm thinking about taking him back to the neurologist to see if there is anything else that can be done. I doubt it, but you mnever know.
G is going to lunch with a couple of friends (usually a weekly happening) on Friday, so I'm meeting a gal friend for a lovely lunch too...does this count as respite? :-)
I'm guessing it does count as a respite. That would really be fun to go to lunch with a girl friend or two. My pulmonologist wants me to put him in a respite home for a week and me go on a trip. Thing is, DH would never go for that. He won't even go over to the community center to play cards while I do water aearobics. He does play once a week at the church but I go with him. A friend picks us up.
I feel prety guilty about my crummy attitude but I jump at every opportunity to get away from him. I know that's terrible. it certainly isn't very loving or kind. But I swear I'll tear out my hair.
Today we have a van picking us up to take us to our son's house. It's a big white van with ACCESS written in big huge letters all over it. It'll be here in about an hour.
The people next door had a UPS delivery truck pull in and he's running around, getting all excited, putting his coat on, etc. and tlling me to hurry up. Had a hard time explaining to him it wasn't our van. It's a UPS truck.
It's the little things in life that'll get you down. Grrtrr.
I wish there was a way to avoid the guilts. I feel the same. When I return home from a short trip somewhere, I sit in the car in the garage for just a one more minute..sad but true.
Mawzy, it's not your attitude that's crummy, it's the lousy disease. Your caregiving takes everything out of you, and as I recall, you aren't a teeny bopper any longer. (-: You're entitled to not like not having any time for "me" things. If your doctor is telling you you need to get away, perhaps you should seriously consider just making the arrangements, telling your DH, and following through. Get your son to help you get him to the respite home. Even if you only have a stay-cation at home, it would do you good.
I had to go to the doctor for shots in my back (epidural, nerve blocks) it take 1/2 hour to get there 1/2 to get back, about an hour for the proceedure if everything is running smoothly. I look forward to that time (believe it or not) today it was raining. DH was all upset because I don't know how to drive in the rain(???? since when????) Anyway, he came with me. Can you imagine that I think of going to the pain doctor for shots as respite?
Please don't ever feel guilty. It's no fun being faced with an over sized toddler having a temper tantrum. Remember waiting for your babies to go down for a nap and savoring some time for yourself.
I guess that's one of the reason I keep working part time. If I didn't work, I couldn't afford the day care and I'd have him in my hair all the time. I know someone that can leave her husband and go all kinds of places BUT I've heard that he's on medication that makes him like a zombie. I sure wouldn't like that either.
most definately having lunch with a friend counts as a mini respite time! enjoy and plan something else soon.! good for you. let us know how you feel after! (no guilt allowed:) divvi
i obviously have a positive and negative side like everyone else. privately i get chewed out from loving friends for not doing like a recommend others do. how is that? do as i say not as i do??? haha.
i tout alot of respite to others but dont get all i need either. i have yet to leave my spouse over nite and have never left him more than 6hrs at a time with an aide over a 10yr span..i know more downtime is much needed by all of us and we must push for that to happen at any cost.
soo. i can dish it out fine, but need to re-read my own posts.:) and listen to my best friends more. our own good advice needs to be heard by our own deaf and nonresponsive ears!
no journals - just wayy too many lost posts in cyber space:) divvi
I understand the guilt too of leaving them, but when I had my last gall bladder attack and was kept overnight in the hospital I did enjoy it--pain medication helped. It was like a mini-vacation of not having to worry about my husband and let my two adult children take care of him. My husband can still do everything for himself but as you all know the constant repetitions and obsessive behaviors can really drain you.
I don't have anyone come in to watch him but when I get my hair done, I drop him off at my parents' house and they keep him company. Once a month his brothers take him to lunch , so I have a couple of hours then. As he can still make himself breakfast (usually a peanut butter and jelly sandwich) and the house is locked up tight, I am guilty of staying in bed a little longer than necessary to listen to the radio or just have some quiet time. Once I'm up my husband is off and running with his questions, questions, questions.......
How I wish I had done that. How I wish there had been friends who would have helped me do that more than I got.
And I bless the neighbors who took him out to lunch once every month or six weeks while that was still working. And I wish I'd figured out a way to make it more often. And I wish I'd figured out a way for me to have friends in on a regular basis, for ME.
chris r, I know exactly what you mean. I had knee surgery recently, and also considered that 'respite", even though I was only there for about 4 hours.