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By Mary On 2009.08.13 11:40
I need your input on this one. I have reached a point in my care for Dad where I feel it is in the near future that I will have to put him in a nursing home. Dad can no longer use his legs which makes caring for him physically very difficult. Dad's mind is about 80%, I think, at best. His mobility from head to toe is awful. The neurologist told us at our last appointment that his medications are at the maximum dose and he feels Dad has reached the point where medicine has done all it can for him with the progression of the disease. So, I also feel with Dad's immobility, he should have 24-hour care. He is pretty much stuck in the chair and position I leave him in when I go to work in the morning, then we have lunch together, and he is back to stuck until supper. My son and daughter are home for the summer and have been very helpful with Dad's needs while I'm at work but school starts up in fall and Dad will be alone. This is not an easy decision for me. I have been struggling with it. Dad recently told me he'd rather be dead than be in a nursing home. Anyway, I have kept my brothers and sisters updated throughout my care of Dad as to his progress and doctor visits, etc. Now that I advised them I want to check into nursing home care, my one sister wants a family meeting to discuss this. Apparently she "knows people" that may be able to help. I'm exhausted and do not want a family meeting. I feel she has known all along, done nothing to help, and now this. My two brothers and other sister have been telling me it is time to put Dad in a nursing home. What would you do? Thanks so very much, Mary

By kuttlewis On 2009.08.13 12:35
I have just put my husband in a nursing home a week ago. I'm still shaking, emotionally and physically, from the decision. I did it because I had no strength left and would have killed myself if I did not make this decision. My friend took me to a doctor who told me I was suffering from exhaustion and depression. I'd reached a point where I couldn't sleep properly and the sight of food made me gag.

I know the decision was the right one for me and him. We talked it over and he agreed. Now that a week has passed, I can see tiny signs of improvement in myself but I wouldn't call myself well. Everybody has responded positively to my decision but I haven't heard a word from his sister or brother. I don't know why. But since they've hardly done anything in the last nine years, I'm not going to waste any energy trying to guess their thinking.

John's nursing home is not the best but if I'm there to fight for him regularly, they will pay attention and do their best.

By WitsEnd On 2009.08.13 15:45
Mary,

A lot depends on your situation financially. I won't lie. The nursing home situation is one that will eat at you. It hurts. At the same time though you have to think of what is best for him. Bed sores are extremely painful. Sitting in one position can cause phelbitis and other problems. You need to do what you think is best for him with what you have to work with.

If you can afford it you could have in-home aids. That's expensive though. Medicare only covers so many days in a nursing home as well. That's not open ended or cheap either.

If you are thinking about doing this at all, it is probably a sign that you know it is probably best. You should start visiting the various facilities and seeing what is available as soon as possible. The better homes often have waiting lists. Also ask to talk to social workers to see if they have any recommendations.

Majority should rule on this. The sister who wants a family meeting should be told if she wants to come get dad and give you a break you'll have his bags packed at a specific time and date. If she has a home she has visited and has a recommendation....you're all ears. If she's going to pay for in home aids 24/7 you can talk about it. If she wants to meet with the rest of the family and they want to meet with her....knock herself out. Short of this.... she should shut up and sit down.

God bless and hang in there.

By Mary On 2009.08.13 16:27
Thanks so much for your responses! I really do so appreciate it. With three of my siblings encouraging me to put Dad in a nursing home, I have been checking into many things as far as in-home aides vs nursing home. I had read many things and made many calls. This is so hard. I think it is actually the best choice for Dad but I know he'll be very upset when he is told. It makes me cry just thinking about telling him. Hugs and blessings, Mary

By lynn On 2009.08.14 21:12
Mary-I know the nursing home decision is a hard one and I haven't had to make it yet for my husband. I know no one wants to go to a nursing home. The real question is where will your Dad receive the care he needs. It sounds as though you have provided the care which was within your capability and the PD needs more. I know a nursing home is in my husbands future because he needs a great deal of medical attention now. In home aids are adequate for custodial care but I know they won't take care of him like I do. I guess what I'm saying is the issue comes down to the degree of care that is needed to keep him safe.

By sooboo On 2009.08.15 02:23
Do your research, go with your gut, and don't look back. There are no easy decisions. You will do the right thing.

By truckette22 On 2009.08.15 09:08
I have been gone for awhile from posting, but thought I would add to this. I had to place my husband in a nursing home several months ago. He is now on Hospice. This disease is so trying on the family and the patient. One day I go in and I go in every day all different times of the day and he is doing real well other than his dementia but I have noticed that lately his joints are stiff or he is just being stubborn. THe nurse ask him to bend his legs at the knee so she could place his feet up in the wheel chair and his legs were just stiff. Then yesterday the nurse had ask him to grab hold of the bar on his bed so he could stand up to be transfered to his chair and he just sat there. I took his arm and tried to move it to the bar so he would grab it and his arm was so stiff I could hardly move it. I don't know and can't figure out what is causing this. I feel like the nursing home is doing the best they can. He is on Hospice and they come every day except on the weekends. Everyone has to accept the aids are not going to give the patient the same care you would give them because they have 10 to 12 patients and you only had one. I do pop in and out to see my husband at all different times of the day just to check on things. THis seems to keep them on their toes.

By susger8 On 2009.08.15 09:28
Truckette, my dad has extreme stiffness in his joints, especially his legs. It's very hard for me to get his feet onto the footrests of his wheelchair, because his knees hardly move at all. It's characteristic of late-stage PD, unfortunately. I haven't found anything so far that helps it.

By Mary On 2009.08.17 11:09
Well, we told Dad this weekend that nursing home care will be in his near future. He was shocked! He seems to even be in denial as to how bad his condition is. I was surprised how shocked he was. I have to ask my husband or sons to help me all of the time now because I do not have the physical strength to move him or transfer him from one spot to another. I do not understand how he could be so surpised by this. Anyway, he agreed to visit some nursing homes with us so we are taking it a day at a time now. How do you do it physically when they can no longer help - it is truly such dead weight? Thanks, Mary

By lynn On 2009.08.17 20:19
Mary-Don't expect your Dad to like any of the nursing homes. I know you want him to be included. I just don't want you to expect his buy in. I have gotten to the point that the decision is mine. I recently placed my hubby in adult day service. He's been 3 days and I ask about activities and lunch but have not asked if he likes it. I probably never will. I'm better off not knowing his answer. I can tell the care he receives is wonderful and he is safe. I have 12 hours a week when I don't worry and I can be off my feet. It's not what either of us want but it helps us cope.

By WitsEnd On 2009.08.18 08:23
I just want to add to what some of the others have said....

Don't expect him to like the nursing home. Also don't expect the care to always be 100% what you would have done yourself if you could have. All you can do is make the best of the situation. Go with your instincts. Of course if you were rich you could hire a live in doctor, 24 nurses and aids, not work and stay there to supervise a personal chef and housekeeper. Nobody I know lives in that perfect world though. Finances and time and resources are limited so everybody has to make the best choices they can. Do it out of love and what is best for the one you loved and then be kind to yourself.

Dropping by frequently at unusual hours at a nursing home does make sure that he gets the attention he needs. Schedule occasional meetings witht the social workers and managers to get an up-date to let them know you are involved.

There is something called a Hoyer lift that can be used to move patients with limited or no mobility from one spot to another. It's not something I am recommending--just providing information on because the question was asked. The best way to describe it is as a sling that is on a hook hanging off a pole with wheels on it. It's not used for taking someone to the bathroom (by this stage the person is usually in diapers)--but it can be used for transfering from a bed to a chair or to the bathroom for a shower.

Nursing homes also know how to put a pad under a patient to help move and turn them and sit them up in bed. It's something of a skill nurses and aids know. Also hospital beds help because they can elevate feet and head, have rails patients can pull on and reduce falling risks and can have special mattresses that help prevent bedsores. Even with all of this, it often takes two people to just turn a patient. You can't really be expected to pick up someone who is dead weight by yourself without hurting yourself. If you hurt yourself, you won't be able to do anything at all for him. Don't feel bad about realizing your limitations. Everybody has them. It sounds like you've done a wonderful job so far.

Hang in and God bless.

By cjsparrow On 2009.08.18 19:25
We put dad in a home when Mom could not care for him any longer. We(kids) live far away. It really was not our decision. The local Office on aging which sent a social worker to the house occasionally told us to find a home now or they would force us. At first I was resentful, but this allowed us to pick him a place. After he went in the bills went unpaid at home and Mom appeared to crater. We discoverd she had diabetes and dimentia and had to put her in assisted living. We realized the heavy toll his caregiving was taking on her and that he should have been in long before becuase neither him nor mom were telling us anything."we're fine,everything's fine". He was taking care of himself alot.

I suggest you at least get some respite care and a social worker to visit. There will come a time you will not have a choice. You are to be commended for taking care of dad but you can't be there 24/7 and you need to worry about your own health and the needs of your kids as well. Your siblings may be more realistic about what needs to happen. Your dad most likely would't want you to take care of yourself and your kids first.

I thought my dad would fight. He hated it at first but he took it like a man and said "its O.K. it is time". That still didn't make it easy on us.Good Luck!

By Mary On 2009.08.19 10:30
All of your support is amazing! Thanks so much for all of your posts. What a difficult decision this has been. I wish it was as clear to me as it is to my siblings, husband and kids that it is now time. Dad is now trying to do things he hasn't since he has been in my care, such as put his shoes off and on. He never succeeds though. He even tries to get up from his wheelchair alone but I know he can't so I don't worry about that one. He doesn't have the strength. I feel he is trying to prove to me he doesn't need to be in a nursing home. He asked me yesterday what date do I expect him to be out by. I tried to explain to him that there is no date, we are going to start visiting homes and want his input and then we'll start the application process once a nursing home is choosen. He said he thought he'd die in my home - well, I thought he would too. He does not feel he needs 24/7 care and he may not today but will in the very near future. Dad says he is happy with things as they are. I am praying at some point Dad sees the reality of his situation and why we have to make this transition to a nursing home. Hugs and blessings to all, Mary

By Mary On 2009.09.03 16:55
Well, we've visited several nursing homes and Dad has choosen to go to a Veterans Home, which I think is actually a wonderful facility. I wish we all had that choice should the time come. Dad goes tomorrow for a physical which is required for admittance to the Veterans Home. My concern is how rapidly Dad seems to be declining. He struggles so with absolutely everything! He has lost weight and seems very weak and tired now. I have to help him eat and put his pills in his mouth now. Sometimes it seems to take him forever to swallow a pill. Boy when I look back on last summer, he is an entirely different person. It is like he is outliving his body. I am so sad for him. I am hoping that when he lives in the Veterans Home the medical staff will be able to somehow make him stronger if only for a couple more months. There is so much for him to do there. Thanks for listening, as always, hugs and blessings, Mary

By susger8 On 2009.09.04 08:23
My sister's father-in-law, who had Alzheimer's, was in a Veterans' Home for the last few months of his life. What a wonderful place -- far nicer than any nursing home I've seen. I feel glad that this kind of care is available for our veterans.

My dad is a WWII vet, but the Vet Home is pretty far from my house and a pain to get to in traffic, so I don't think I'll be able to go for that option, if the time comes.

It seems when a person starts losing weight that it can be a sign of being in the final stages. I see that in my father. I once told him that the time I worry about him is when he no longer wants to eat ice cream -- he hasn't reached that stage yet!

By Mary On 2009.09.04 15:54
I will worry when Dad no longer wants to eat chocolate. However, he barely eats now. He even says ensure is too filling. Some times he'll choked down a little fruit for me but usually he says he feels like he just ate. I prepare a meal anyway and ask him to eat as much as he can. His doctors don't have any answers for us and a feeding tube is not an option - Dad's choice. Dad has skinny arms and legs and a bit of a belly yet. I try my best to keep him hydrated but even drinking water is hard for Dad now. I have purchased all kinds of cups, with and without straws, in an effort to try to make drinking easy but Dad usually ends up with more on him than in him. Dad does NOT want me to feed him either. Sometimes I think the combination of no appetite, food not tasting as good as it used to, and the difficulty he has of getting the food from the plate to his mouth cause him to not eat. Watching Dad struggle with Parkinson's Disease has been the worst experience of my life.

By Mary On 2009.09.08 12:36
Dad is no longer eating......not even chocolate. He drinks water but struggles to drink and get his medicine down. I am very, very sad. The doctor said to encourage him to eat and drink and the rest is up to Dad, that these are signs of the end stages of the disease.

By annwood On 2009.09.08 13:33
Mary, I am so sorry that you are having to go through this. The end is tough. I am assuming that you did not put your father in a nursing home. Do you have Hospice involved? They would be a great help to you at this point.

I would not worry about the food too much. He will eat when, and if, he is ready. As the body begins to shut down the food requirements are lessened. I would concentrate on soft foods that he might like - ice cream, jello, pudding, and not worry about nutritional value.

We are here for you.

By overwhelmedinFL On 2009.09.08 13:55
I am so sorry:(

By Mary On 2009.09.08 15:18
Thanks for your replies. I need the support of this forum now more than ever. Dad is not yet in a nursing home. We have an application in to the Veterans Home for processing and have been told we should hear something within 90 days. I did not realize this process took so long. I do not have hospice involved - guess I was hoping or in denial that he will bounce back.

By annwood On 2009.09.08 17:49
Mary, Hospice is not the end. It is now for people like your father who have a progressive disease with no hope of a cure. I personally think that they would be of great benefit to you until you get your father into a nursing home. They can continue their care even then. I think one of he greatest thingsthey did for me was answer all of my questions and explain just what was going on at any given time.

By susger8 On 2009.09.09 07:46
I agree -- hospice is SO helpful, not just with physical things, but with supporting the patient and the family.

When my mother died (cancer) we didn't get hospice involved until less than 2 weeks before the end. Now looking back, we would have been so much better off if we had their support much earlier.

By Mary On 2009.09.09 10:08
I understand that hospice is no longer a service for the "end." However, Dad would not and it would freak him out, I'm sure, after what he went through with hospice when my mom was dying of cancer. I talked to Dad about finding a "service" to come in and be with him during the day and he wanted nothing to do with it. I feel he needs 24/7 care and am not comfortable with him being home alone any more. The kids are off to school so I have no back up now. Not sure how much to push this with Dad. As always, thanks for your support. Hugs and blessings, Mary


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