My husband is 60 years old, he suffers from FTD. He was placed in ALF last March. He had become aggressive...he was very strong. He no longer is able to use utensils so I go every day either at lunch time or dinner to feed him. He is incontinent...unless he is caught in time, doesn't really speak, doesn't move his dominate arm, he does walk & still has a wonderful smile. He is on medication for his aggressive behavior. Here lately, I am considering bringing him home. He started losing his memory 10 years ago. I know he has a terminal illness, however, that is his only medical problem....he could live 10 or more years. Is an ALF what I want for him, with folks that are 20-30 years older. I know I am going to lose him someday, but, wouldn't he feel better if he were here with me for the time he has left?? Please tell me what you think.
Oh Kadee, there are so many factors to consider. I did bring my husband home after three years in an AD facility. But, he was bedridden, noncommunicative and was very easy to care for. It was much like taking care of a 200 lb infant....he ate, slept, pooped and peed.
Okay, here goes....is your house set up for a curious "toddler"? Do you have stairs? Are there people who are willing and able to help you when you need to "escape"? What is your health like?
I know how you feel....my husband was in a facility at age 55 with peole who were much older....but you know what.....it didn't matter. He was in worse shape than they were. It was only after he was in Stage 7 that I could even see me bringing him home. Most people thought that I had lost my mind, but I spent most of every day at his facility and could see that I could do what the caregivers were doing and save myself over $7000/month. I was able to bring in aides to get him up and bathe him and they were willing to stay while I vacationed etc......
I wish you well with your decision, but I worry about you and the fact that he has aggressive behaviors....even if they are controlled...that can change in a heartbeat.
Sandi, Thank you so much for your thoughts. You took the words from my thoughts, that I can take care of him just as good or better than the aides. And, he is worse off cognitively than most of the other residents. Neurologist, say a 18 month to 2 year old. But, a very strong one. I just can't remove the thought out of my brain that he doesn't belong there. As you mentioned, it is very expensive. I just want the last years of his life to happy. He has been crying more recently, which worries me that he knows more than we think & can't express. I guess that is a factor in my thoughts. Thankfully, I am in good health....however, I would need to hire someone to help for showers, errands, appointments, etc... He is in a safe place now...even though like any other health care facility, I see things, that I don't agree with. I am trying not to make a decision that I will regret in the future...it is just so hard.
Kadee, Let me say up front I have no experience with this. My DH is still at home and at the rate we are going I wonder if he will ever be placed in a facility. You say he can't use utensils and has to be fed. If you bring him home you will have to feed him all his meals not just the once a day in the facility. Of course if you can get in home help that may not be a problem. The other thing I noticed was...you asked "wouldn't he feel better if he were here with me for the time he has left?" Do we really know how they feel and what the change in enviroment would do? My DH has AZ and as far as he is concerned he just can't remember things. He actually can't remember much of anything. He is also under the impression that this doesn't affect us/me that much. I tried to talk to him a while ago about me finding something to do outside of the house and AZ and he just didn't see the need for me to do anything. I know I shouldn't say this and some people here will think I am a terrible person...but sometimes I wish DH could be place so I could relax a bit and do something other than going to the grocery store and doctor's appointments.
Whatever you decide will be entirely up to you and I wish you well whatever decision you make. God Bless.
kadee, i will also weigh in. while we would all love to have our spouses at home for the duration sometimes certain factors impede it becoming a reality. surely aggressiveness and inability to control behaviours is on the top of the list. if i remember you have had bouts of serious behavioural issues with DH and he is a big man compared to you. while he may be under control now we all know anything can change in a heartbeat. meds sometimes need to be tweaked as they become tolerant to them. my own opinion is that like sandi i would not attempt to bring them home unless they were bedridden and in late stages and a no threat to you or family members. if they are still mobile there can be factors of falling and accidents as we have seen here on the boards many have balance issues. your home would need to be basically rearranged to accomodate all his needs and this can be a challenge at times. unless you have aides alot of the week it would be very hard to manage his personal care as well. changing a grown man is a daunting task esp if they are even non aggressive. it takes plenty of stamina to do this round the clock. i know my back has paid the price for years of continuing care here too. he is in a safe place now and has the care he needs and you can oversee that its the best for him at this point. placement is never easy and many have second thoughts we have read it here many times. but in the end, we need to rationalize whether its the best for them or just to appease our sense of guilt or saddness. it would be much harder on you both if you brought him home and it didnt work out and you'd have to restart the process again maybe without as much success. just my own opinion, i know you will do as you see best. divvi
Kadee your husband most likely doesn't realize that he is the youngest in his group. Hopefully he will have more mental stimulation being among others than being home. You can visit with him as long as you wish-and then go home. You can leave your house whenever you wish without planning it out first. You won't have to worry about a home carer calling out sick. In the end-listen to your heart with your decision. I know it is not easy.
Kadee, I understand your dilemma, we "younger" spouses have the additional sorrow of seeing our loved ones with an illness that normally doesn't happen until much later in life. I agree with the others, that since he was aggressive in the past, the best place (for now) is probably the facility. Perhaps you should reconsider the issue later on when he isn't as mobile. I also don't think it matters as much to your husband that he is younger than the other residents. I agree with what Sandi* once said, you can hire a lot of help for what you pay for a facility; however, I think it may be too soon for you to bring him home.
Kadee, my DH is not aggressive yet and he is quite a bit older than yours(72) but I do have a lot of concerns for your safety. I also agree that we don't know what they are actually feeling and my DH has no substantial feeling for me(as a husband to a wife) at all so if he were to become aggressive I don't think he would know what he is doing. How long has your DH been on the medication for the aggressive behavior, and what is the medication? I always err on the side of caution. That is a really tough decision but I hope you consider it from all sides and not just the fact that you want him at home. Good luck and I know that you will make the right decision when it comes right down to it.
Kadee, good luck in trying to make your decision. I am sure this decision is almost as hard as the decision to place him in the first place. While I would have loved to bring my husband home, I knew that I could not handle it. Even though he was not mobile, I knew I could not handle the lifting necessary to keep him clean and dry. You need to think it through and do what you feel is best for BOTH of you.
Thank You & God Bless You! I knew I would receive the best advice from friends that really know what it takes to place or thinking of placing a loved one. It is so hard to know you have made the right choice. Sometimes I put on my rose colored glasses & think I can take care for him...and thanks to you I know it would not be a good idea at this time. I just admire every one of you that are able to care for your spouses at home. I have loved this man since I was 17 years old...it is hard to accept that I can not care for him when he needs me the most. Thank you again for the reality check. Hugs Kadee
Kadee, you are still caring for him when he needs you the most. You are getting someone else to do the heavy work, while you make sure he is comfortable and well cared for. You are still his advocate.
Once again, Marsh is accurate...Caregivers can give the physical care, but only you can to the emotional caring and that is also very important... I just love free medical advice!!!!!!!!!!!!
Kadee, they are so right! I don't think you have stopped being the caregiver at all. There is a lot more to it that being able to physically care for them.
Kadee, I absolutely understand what you are going through because I have been there. When DH was dx'd with FTD in 2008 at age 58 (similiar to your circumstances) he was aggressive and periodically physically violent. I put him in a dementia unit in a local ALF. He was the youngest by at least 15 years, probably more like 20-25 years, most of the residents were women and were much farther along in their dementia than DH. He escaped or as they say "eloped" and ended up in psych facilities for 3 months. At that time he absolutely understood that he didn't belong there and actually plotted his escape. After 3 months of med adjustments and pleading on my part to bring him back home (because I knew he would continue to want to escape and be aggressive towards the other residents) I convinnced the treating physicians to allow him to come home. Their requirement was that I have a ft 24/7 aide for our safety. H e has been home for 2+ years but we have ft help which costs as much (if not more if you consider transportation, food, etc) as an ALF. How has he adjusted to being in the ALF? My thoughts are if he's adjusted and is okay being there, then it is too soon to think of bringing him home without 24/7 help. It is heartreaking for you to see him in a place where he doesn't fit the demographics and I truly feel your pain. My DH was helping the others and consoling them by patting their hands and muttering condolences about their situation. Not sure he could still do so, but I will keep him home as long as his behavoirs are under control. God bless!
Thank you, Joan and everyone else for your thoughts. You are right. Kadee's situation is so much like mine. Your thoughts have put things into perspective for me. I know I would have to have lots of help. We live in a rural area with no close neighbors and our children do not live close. While we have plenty of wonderful friends, I would not want to put any of them on the spot. They already give me so much support. Plus my husband is twice my size and SO stiff which makes him hard to move and turn over...probably impossible for me to do by myself. It made me feel not so alone in my situation when you all responded to my post and understood my feelings. I found so much help and comfort several years ago with this site and then got overwhelmed the past couple of years and just didn't have (or take) the time to post or read anything. You have reminded me of what I have been missing. Love you all.