I have been a full time caregiver for over 10 yrs. Before that I worked full time, went to school, etc. If I did get help with my dh, I have no idea what I would do with my time. That is very scary. I am a loner and always have been so I guess that is why it is easier for me to be at home with my dh. Sometimes I do so want to just go out for a walk, but that does not justify having someone here every day. Anyone else with this issue?
Same here, brindle. I retiredfrom my career early to take care of DH, almost 8 years ago. I'm a loner now too and don't have a clue what I'd do with in-home help. I take him with me most places, use a store wheelchair, etc., use drive-thru windows a lot. I take the dog for walks 3-4 times a day - short ones and I can still see the house when I walk. I read, I use the computer A LOT. I have gotten so organized in the last couple of years, - now that's scary!
Since there is no funding for in-home help in our area, it's a non-issue anyway, I guess.
This is a big issue with me. I have help on Weds. for 4 hours. That is the only time I get out of the house and/or see other humans except my dh. It is very, very depressing for me. I have been use to being a housewife with my dh working and coming and going as I want during the day. Sewing, quilting, etc. and doing various craft fairs has become a thing of the past and very depressing for me that I can't do them now.
My dh use to go with me on other days other then Wed. to complete the shopping that I might want to do that I couldn't get done on Weds. Now, he doesn't want to go and walks so slowly that it has become a chore to take him with me. So I just put everything off until Wed. and run around like a chicken with it's head cut off getting shopping chores done with little or no time to do what I really want to do like go to the mall and just look around.
Terrible to say, but I feel like I have no life except in this house with my dh. It is very very depressing to me and I know it is taking it's toll. I am thinking about getting more help.
I can relate totally. My wife was DXed in 06. I continued to work out of the house, albeit a greatly reduced level, picking and choosing assignments to accept, until 3 years ago when care-giving for DW became a full time job. Everyone kept telling me, "you've got to get away, take some time for yourself, you need a break." The concept of leaving my wife alone with a stranger was just not within my realm of reality. I didn't feel the need to do it, nor did I want to do it. Like you it was easier to be at home with my DW with no worries about how she was doing.
A triple bypass procedure two years ago and two wise daughters provided me some real attitude adjustment. While I was hospitalized they interviewed and hired an aid for 12 hours a day. This was in their terms, non-negotiable, "Dad you need help! and we can't be here." (One resides in NY the other in OH.
The aid started driving me to rehab 5 days a week (no driving for 6 weeks). Quickly, I made some friends at the rehab facility and what started as I'll pick you up and drop you off, turned into, let's go to a movie, or there is a lecture we're going to want to join us? My circumstances and my daughter's insistence made the unthinkable a reality. I still have the aid in sometimes a full day, more often for an evening. DW goes to sleep at 8 or 9 and that eliminates her anxiety when I'm not present . Luckily my DW is generally very cheerful and incontinence is a PM problem, nearly every day I have an offer from friends to "air DW out" as they call it. They will take her to lunch or just a walk on the beach. These breaks are usually an hour, never more in duration because my shadow (DW) doesn't function too well without me in her sight As for me: I go to dinner with a friend, or a movie or just wander the beach or even a mall. I've even just gone to the library for an hour or so and read every magazine on the shelf. Our condo has an exercise facility, so DW and I are there every morning, she parked on a stationary bike while I work out. (I tell her coast down hill when she stops fiddling with the peddles). The away time I found to be such a foreign concept and unacceptable is now a regular diversion Like so many things relating to this disease: I took Joan G's advise we do have to Adapt in our for our own survival
My Caregiving for DH started in March 1988 and slowly escalated into fulltime, at-home Caregiving. Dxd with VaD in 2006, his driving stopped cold and in-home help started. Even then, I wasn't getting out, except for medical appointments. About May 2009, I was given 4 hrs a month respite time--for me --free time. When told, I said "Thenk You" while "What the H**l doI do with that?" ran through my head. I figured it out. I could go shopping, where I couldn't take DH. Out to lunch with a friend. My Brotherand his son were in a Community Theater production--I saw it. A famly gathering. a niece's wedding. If I could have found a craft class available when I could have gone, I would have.
However much or little time as you can arrange--do it. It is important for your own welbeing. Since DH was placed at the end of January, I have a huge window of time to fill. The little bits of respite I did have at least gave me a bit of experience doing that after such a long time when all my time was filled. You are a better Caregiver when you have the chance to recharge every so often. Your LO will adjust to your being away and get used to someone else helping him/her. That's important too, in case a crisiis makes it necessary (another topic).
Judith KB, I am sure you know that you are eligible for more hours through the VA, I get 10 hours a week, they can be taken in increments or all at once.
This was interesting opening up this thread this morning, as yesterday was my first respite day, and I took the full 10 hours. We live one and a half hours from the two "big towns", so I drove to Hilo . I had PROMISED myself that if I got passed for the respite, I would go to the beach at least 2 hours each time. So I drove to a county park with the loveliest lagoon, and a view of Mauna Kea and old downtown Hilo in the distance. I sunned, (first time in years!), read, and had a really good swim. Ate some goodies and then packed up and went for a coffee.
Walked in the mall just looking for about an hour, then, drove back towards home. About an hour before out place is Volcanoes National Park. I drove to the "Bird Park" and walked the one hour hike through the rainforest, did not even see one other person. I am pleasantly surprised what good shape I am in. And, proud of myself for doing such good things on this day.
One thing, I had heard many of you say how emotional it is to leave your mate at home, especially the first time. Well, no WAY I was not going to do that...yeah right.
I was not prepared for the onslaught of emotion the first hour as I drove to town. It came from the deepest well of life in me, and I had to choke it up, picturing Dado in his sad state and just hurt hurt hurt. The lovely thing was, when I finally stopped crying, I realized that I was doing such great job with him and did not beat myself up for a change.
When I got home, in some strange way, it was like he never even knew I was gone, one minute he did, the other not. He did the things he always does when I am home, used the bathroom with the door open, walked around in his underwear, and told the Home Care Aide, "Thank you Honey" when she made him lunch.
These things really opened my eyes, he is truly sick , and I can only do so much. I love him so, and I kissed and hugged and thanked him for being so good about me leaving.
One activity that I was able to maintain during the 6 years my husband was at home (after dx) was my exercise classes. I would recommend this to anyone looking for activities for themselves when they can get out of the house. Not only does exercise help you deal with stress, but a class format allows you to socialize too--which is so valuable and helps break that caregiver isolation. Over the years I've made some great friends in class, some even came to visit me last year when my Dad passed away. Try to pick a form of exercise that you'd enjoy and give it a whirl.
Vickie. I did try two in home care groups and was so disappointed. I had to train them before I could do "my thing" which did not leave much time for "me". I do have a neighbor who comes over once a week so I can go to the market and another friend who will come over if I need to get out. I try not to stay out more than an hour at a time as I never know how my dh will do (bm, mucous, coughing issues). Sometimes I am even too tired to care about going out and cancel. I have no friends and both of my children work full time (not their father). Shopping can only go so far - I used to enjoy it with dh as that was our walking time. I don't want to volunteer and have no real hobbies any more. Don't care to go out and about on my own to eat or see a movie. I did those things before I was married and did not enjoy it then but did it anyway. Thanks for all of your advice.
Brindle, in our area, the home health agencies cannot keep help. You are never promised the same aide. This would be awful for DH to have different people coming in = let alone me! I might as well do it myself. When he becomes totally "housebound", I will probably have to do something - but what, I don't know yet.
I can find enough things to do in the house or yard to keep me busy - when I want to be busy. Or, if not, I can read. You do need to find something to do, though, even if at home. It's tough, I know.
Thanks, Vickie. I guess my issue is that when I start a project, I want to finish it. Caregiving does not usually allow that. I do like to read. Not much for phone calls. My dh is totally housebound. Makes a difference as I could always take him in the car with me or we could go for walks. Sometimes I think I am more fortunate than other people as I am so used to being at home. Most of the time it doesn't get to me. Early on, I tried keeping in touch with some people locally who had to deal with AD. They did not want to acknowledge (nor did their spouses) that they had such a disease. I guess if you don't talk about, it will go away and we know that won't happen. I sure appreciate this site. Thanks.
Coco, thank you for the story of your lovely day out. I was one of those people you cite who also had to deal with the flood of emotions the first time I left Jeff with someone!
As for starting projects and feeling fully invested in them--still hard, even with Jeff at the ALF. I think we'll always feel torn, as long as our LOs are living. Marilyn's exercise class is a good one. I need to kick my tailfeathers back to yoga. I would also love to find some adult ed classes of particular interest to me.
I've asked our son who at present is not working (looking, but nothing yet) if he will come once a week to take his dad to lunch at a local food bar that both love. He is coming this Friday so I can go to a luncheon with friends. Big bonus this week also as dh fishing buddy is taking him fishing tomorrow which will be a whole day as they are going out of town to a lake. This fishing buddy is the best and I know he would take dh someplace more often if I just ask. I'm waiting though until I can no longer be away for more than a couple hours and may need him to help more. I still try to go to water exercise twice a week but I'm never fully at ease even though I ask dh to please stay in the house. I leave a note on the cabinet (our regular note leaving place) where I am because he will forget by the time I'm out of the driveway. Ever since he fell while outside and I had to call 911 to come get him up I keep close watch when he is outside. So far no regular time to have help so I can get away. I really don't know what I'd do with that time.
Coco, the first time was hard for me too, the emotions and guilt feeling of wanting time for me, and having to leave him in the care of others, but that soon passed and now I know i could not have gone on much longer without some me time.
I now have three days of daycare, Mondays, Tuesday when i go to my quilting group, and Thursdays, and on Wednesdays my dear daughter drives an hour down to see us and spend time with her dad, while I go to meet up with my Embroidery group of girls, that i taught 8 years ago and we stayed together meeting once a week in our homes. Without these days, I know I would have crumbled by now, day care here is very affordable, costng just $16.50 a day for 6 hours, and that includes a cooked lunch and activities for DH...he gets on well with everyone, and gets dropped off all smiling and happy...as long as he's happy, I'm happy too. Then when he gets home, he tries to tell me all about the day...never makes sense, but that's Ok, i just listen..
julia such should be our costs here in the usa! thats so great that australia has that in place !. of course you must take full advantage of that kind of support@and more a plus that he enjoys it and you get a break! divvi
I'm glad your DH enjoys day care. When my DH went, he liked it also. He loved to dance so he was very popular with the women (grin) I still remember the first time I took him. When I picked him up, he said that he thought he'd never see me again. That just about broke my heart. Once he knew that I'd be back to pick him up, he was o.k. That was all at the beginning of A.D. and I was still working then.
I never ever thought he would go to day care, it took me over a year to get him to go...it's the best thing, and I'm thankful that he's happy to go. i don't think I could get through a week without it..as it is, from Thursday's daycare to the next one on Mondays seems like it's never going to get here. Yesterday he thought he had been up in a plane with his old work mates..who am i to tell him different, as long as he's happy. We are fortunate that the Aust. government subsidises part payment for the day care and also 63 days a year of respite for high care AD patient.
I have 4 hrs a week respite. The lady I hired also cleans my house, because my DH doesnt think he needs anyone to stay with him. She is very good with him, its workibng out well, I have a wonderful few hrs and come home to a clean house.
The day care sounds wonderful. I don't think my dh could handle it he is so tired all the time and sleeps off and on all day. Plus the day care centers are about 30 miles away from me and with the Ca. freeway traffic in the morning when I would have to take him...would make me a basket case and then I would be picking him up with the heavy freeway traffic when it was time to come home.
I have help from my cleaning lady every Wed. for 4 hours. But, what I would really like is for him to be gone so I could have the house alone once a week. But...can't find what I can do for him. For at least 2 or 4 years I have not been out of this house or in this house without him. Having been a housewife for years and years with no one in the house this is driving me crazy, plus making me feel like a captive in my own home. Getting very depressed.
I can't leave him home alone and now he is getting where he doesn't want to go out with me much. He is beginning to walk so slow.
You voice my thoughts exactly. I wake in the morning so depressed. My hb will still go wherever I want to take him but I DON'T WANT TO TAKE HIM EVERYWHERE. I want to be my own person and do what I want. I feel like the walls are closing in around me. Daycare isn't the answer because HB isn't ready for that yet. I am tired of telling him to stop taking his clothes out of the hamper and putting them back on. I have always been such an independent person and I suppose it is serving me well now as I take care of everything. I need someone with whom to talk things over . I am so weary of watching him move everything on the counter a million times a day, Such petty complaints when things could be much worse. Like you I have to keep looking over my shoulder to see if he is still behind me. I am thankful he can still walk although so slow.
Shirely: These things that drive us crazy and causes us to be depressed most of the time are the same things that people that have never walked this path don't understand and if you tell them...they just look at you like so..."what is wrong with your dh being home with you all the time." It is difficult for them to understand that you can't just run to the store for a qt. of milk. Or go get your nails done or run to the store to get a birthday card for someone. All the "little" things that you can't do becomes a mountain of things. And, then it becomes more and more difficult for us to function on a level that might make this easier for us. Finally, it has become ALL ABOUT ME not him and he is the sick one. Then the quilt sets in...why am I so self centered?
It's like I am in a "round house" and I can't figure out how to get out of this "round house" and all the air is being sucked out. Which way do I turn. Someone said to me...put him in a home for 4 or 5 days respite.... great suggestion...Right?...First...tell me how and when I can get out of this house alone and go check on a place to put him so I can get some respite. Then someone comes on here and tells their story and it sounds so much worse then my story and I feel so sorry for them and quilty that I am having a hard time doing the caregiver roll for my dh.
I have to snicker when I see the expression "caregiver role" like we have a part in a play. It isn't a role anymore...it's a way of life with no expection of relief.
I have an appointment with an attorney to go over my trust and directives. Can't have dh's name on my stuff anymore. He can't change a thing because he doesn't know what he would be signing. On the calendar I have written name of attorney with the word "bras" after. If dh asks what that is, I will say I have been invited to a bra demo party. Hopefully I can be home in two hours. Because dh opens the mail, I can't have attorney sending bill in mail so I will try to pay at the appointment.
It is so sad when we have become "lone operators". No more soul mate or confidante. I go to church and seek out a woman who just placed her dh because of AD. My whole world centers around AD.
shirley--if you don't want to pay at the appointment, perhaps the attorney can email you a bill. When my husband was early stage and I didn't want him to see things in the mail (i.e. daycare bill or home health agency bill) they would email them to me. By that time he didn't use the computer.
Love the bra party idea--that's one I never thought of!
I want to remind everyone - do not feel guilty just because you think someone is having a tougher than you. I will share what I learned years ago in a group counseling for women abused as children - what may be traumatic for one girl may not even affect another. Example: there was a woman in her 50s who as a 6 year old swimming in a pond had a teenage boy come up, reach down and stick his finger in her vagina. That was the extent of her abuse BUT that one trauma impacted her more emotionally than my years of sexual abuse growing up.
Yes others here might have it much worse financially, emotionally or physically, but it is still our pain and our loss. Do not minimize the effects on yourself anymore than you would on anyone else here. My husband is not nearly as far a long as others here but for me the change is painful. Yes, I can't imagine how I will be when my husband gets further along. If I try to minimize the effects on me, I am being unfair to me.
So be kind to yourself, allow yourself to be where you are. Otherwise we will be in denial and the future will be harder. Maybe we learn in the early stages how to mourn each loss and then move on enabling us to continue the process for the whole journey.
Thanks Charlotte. My dh isn't as far along as others but he is so different than normal I feel like he is a stranger. I really lost my husband two years ago and this person now lives in his skin. I miss the old guy who was but feel so sorry for this guy and know I will miss him when his time on earth is over. I know I was in denial for awhile even to myself. I tried to hide his situation from my family as if they couldn't see the difference. Sad - that's my life now but he has lost his old life too.