Caregiving to someone who gets more and more difficult.

I care for my longtime companion who is a lot older than I am. He has mobility impairment and mild dementia. He gets around with difficulty, using a walker. We don't live together, but - in actuality - I am at his place most of the time, sleeping over most nights.

After a long struggle to get him help he is eligible for, as a person of low income, he now has a home attendant who comes by to render quite a bit of help. In that sense, things are much improved and I can go home to where I live for more time.

I guess I'm here mainly to whine. He has gradually worsening mild dementia, probably vascular dementia. His personality has changed a lot, with the latest thing being that he is prone to anger. He used to have a sparkling sense of humor, but much of that is gone. At times, he can be very endearing. I really care for him, and I'm making it possible for him to stay home, rather than be in a nursing home. I'm not looking for any pats on the back . . . just some empathy. He blows up at me, and this is happening a lot.

In the middle if the night, he'll get up to sit in the livingroom and end up sleeping in a chair for as long as 5 hours. This is bad, as it leads to his legs and feet swelling. So I'll try to gently rouse him and encourage him back to bed. But he gets startled and gets quite angry. Getting him to do just about anything is like pulling a tooth. Just getting him to take a shower is a challenge.

I'm getting depressed and demoralized from him snapping at me so frequently.

Having the attendant is not as much help as I hoped it would be. I find that these attendants, who are rather lowly paid, seem to have no initiative and tend to not know how to do anything. They are supposed to be "homemakers," but they don't even have basic skills at doing laundry or simple cooking. About all they can do in the kitchen is reheat something that I have already cooked. They have no idea how much detergent or bleach to put in the washing machine. This may sound hard to believe, but it is the absolute truth. I often have to rewash dishes they've done. At least the person coming now is nice and willing, so I figure I'll just keep teaching her things. My goal is to be able to go home to my own place for like 48 consecutive hours, without having to run over to check on him and the attendant.

I'm retired and have the time to help my friend. But I wish he did not get belligerent so often. Some of it he probably can't help. He was in a nursing home recently for a few months, and I thought the conditions there were not good.

I get backup and even moral support from the VA, but that's it. His family (3 adult children) are far away and show little interest. They've said to me, "He's just a pain in the @$$, and we don't know why you go so much out of your way for him." So, though they call him now and then, but they never call me.

I know I could wash my hands of the whole thing. I choose to be his main caregiver. But, at times, I get very demoralized. I don't know what I expect anyone to tell me.

You are doing a heroic thing. Take the time to care for yourself, it will help keep you going. And it sounds like you have a caring helper; it is worth the time to teach her how to do things; and if possible, you might try making up instruction cards (so much detergent goes in the washer, etc.; rewarm casseroles at 350 degrees for 15 mins, etc). It's worth it too to look around and to see what services your community offers for the aging and disabled.

Thank you, Kid. I guess the fact that the attendant is a kind and caring person is what I should focus on. I am telling myself that she is worth investing time in . . . that, while I have to do a lot of hand-holding now, she should eventually catch on and be able to remember how to do what I show her, though I may have to show her more than once or twice. We're talking here about things like frozen foods that just have to be heated in the microwave oven. I've discovered that this gal never, ever reads the instructions printed on the box. Some microwavable items have to be stirred halfway through. I'll have to explain this to her. The instruction cards is a good idea which I will employ. I am finding that you have to break each task down and explain it step-by-step. Then, typically, I find that I didn't break it down fine enough.

I am investigating everything that my friend could possibly be eligible for. There is a senior "daycare" that the VA will pay for. I really should visit it, even though my friend says he absolutely would not go to it.

His recalcitrance is getting completely out of hand. Yesterday, I left with what I thought was the understanding that he would attempt to shave hinself with his new electric razor. (Since April, I've done most of his shaves with a disposable safety razor.) I explained to the attendant to set him up with a TV tray and a mirror. I got him to agree to do it. Six hours later I come back to find that he just blew it off. He could have been doing it while watching TV. I think it's absolutely ridiculous for him to be this unwilling to do any little thing I ask of him.

I have even told him that I am going to walk away from this arrangement, if his attitude doesn't improve. That would result in him being put back into a nursing home against his will. He tells me that no one can force him into a nursing home. I've told him that it will never be me who does that, but it will happen if he doesn't have me managing his care (and doing a lot of it, myself.) He is unable to make himself a piece of toast, or to shower himself or to clean himself up when he has diarrhea (which happens recurringly.) If I relinquished my role as his care manager, the powers that be will not simply leave him to sit in his own excrement and rot away. I'm sorry to give a graphic detail, but that is the level of dependency that he is at. He is flat out delusional in his conception that he can just do whatever he wants and that he cannot be compelled into anything. If I gave up, I would have to notify the VA and his family. They would then "place" him somewhere. They've all already asked me if I would like them to have him adjudicated as incompetent and have myself court-appointed as his guardian. I've told his family and the VA "Absolutely not!" If anything ever has to be forced on him, it won't be me doing the forcing - not when he has 3 adult children. I'm his friend, and I'm not looking to have any legal power over him. Why should I want that?

The VA social worker says she will come out and explain to him that, if he doesn't cooperate with the homecare program in place and I give up my role helping him, he will be put in a longterm care facility. That's what I've asked her to explain.

I'm not looking to threaten him . . . . just to aquaint him with the reality of his situation. Later today, I'm going to bring up the not shaving yesterday, as an example of behavior that I will not continue to accept. Of course, he will respond - as he always does - by saying that I must be nuts making a big deal out of nothing. But these are the little nothings that add up to a pattern of him not in anyway trying to lighten the load on me. I am feeling like he is making a fool out of me, or I am just willingly being a fool.

(((Rose76))) that is a heavy load to carry. I understand, I volunteer in this sector and see situations like yours quite a lot.

I think you are wise not to take on too much responsibility, social services can see someone like you and although it is not right they can assume a lot, a willing horse and all that. Support as a friend is one thing but court appointed guardian quite another.

Please do not take this the wrong way, I realise you are not trying to threaten him but acquaint him with the reality of the situation but it's possible he may be at the point where his reason is affected by the disease. Please remember it may feel personal but he has a disease which is changing the capacity of his brain to understand and empathise with others. It's also common for people with dementia to also suffer with depression which can also add to lack of motivation which may explain the shaving situation.

Are there any clubs/groups in the area where you might go to socialise with others in similar situation? Sometimes being with others can help lighten the load a little, even if just to know you are not alone.

Sending big hugs to you.

You might do yourself a favor and maybe it would be best for him to tell the social worker you are walking away and he has no one else, and get him placed in the long term care facility. I know it sounds callous, but you will have to do this eventually. It's just a sad situation. My parents are nearly at this point, too.

Have you investigated what help there is for YOU? Several things come to my mind.

Support Groups and Networks. There should be a group in your comunity for loved ones and support persons of those with dementia and alzheimers. Investigate too if there is a support group for caregivers.

Respite care. As he is already in the Home Care system this ought not to be difficult to arrange. Respite is when you are able to temporarily place the ill person into care (like for a weekend). This allows the primary caregiver an opportunity for their own much needed break. In some cases, respite is also used as an opportunity to observe and evaluate the ill person to guage the extent of their illness and draw up a plan for their needs.

Have you taken any kind of caregiving training? Some communities have courses for this. In addition to training in how to care for someone I believe they also spend time on self-care, balancing your own needs with that of the person being cared for.

I know the challenges of caring for someone in that capacity. I provide daily assistance to my disabled mother (we share a house). I can relate to the feelings of being a hired hand sometimes, or personal servant.

I'm in a similar position...


My mom started chemo earlier this year, (completed her treatment two weeks ago) and then her mind just suddenly deteriorated.


She went from normal forgetful (67 yr) old mommy to belligerent, verbally abusive, delusional, stuck in time loops mom, after just 2 months.


I was so ill prepared, its just not funny.


It hurt alot at first, being the main target of her vitriol. It was also quite shocking to hear my mother use swear words for the first time in my life... My older siblings didn't take me seriously at first because they never saw that side of her in the beginning.


My T at the time helped me alot to process her anger and manage how I reacted... I'm an emotional sponge so I ended up mirroring her moods alot at first. It was very draining.


Everything is a battle, she never wants to take her meds (I'm either drugging her, trying to kill her, or turn her into a junkie) refuses to wash, and hoards anything she can find, even candy wrappers if you don't watch her... She's also under the impression she is able to be self sufficient, but she reheats her meal and then forgets what she's doing mid way, then still asks you who's food it is... She also loses track of time and once swept the yard for three hours!!


Of course she argued that she didn't and I was just trying to convince her that she is going crazy.


I don't really have any sage advice, I just wanted you to know I get it, PM if you ever wanna chat, we can whine to each other

Rose I have no magic words, I have worked medical all my life, some sweet lil ladies and men and some pretty mean ones too due to dementia, my heart goes out to you. You have done more than most people would be willing to do.

I also agree you need to find out what help you can find for You!

Yes many people that are home health workers are paid lousy and many just don't care which I can never figure out why the hell do this type of work if your heart isn't in it!

The one you have now seems willing to learn, I'd make out some cards to just jolt her memory about what to us seems simple .. Are you able to just go every other day?

As for his anger there are times when it's dementia related and probably more times that he's angry about his situation and instead of working with someone to help himself he's just making matters worse and he could easily wind up in a home.

It's hard to see a loved one deteriorate and not much you can do .

Please do take care of you, even if that means taking a vacation from seeing him daily, kinda like the oxygen mask on a plane put yours on first so you can help others

((( hugs))

Thank you all above for taking the time to read my posts and extend your kind words.

Sprout: I do need to remind myself that much of the behavior I'm seeing is probably dementia driven. Thanks for being brave enough to suggest that. You know, caring for sick elders is what I did most of my life as a nurse who worked mainly in geriatric settings. I have a ton of experience working with people with dementia. But I never knew those folks as being any different from how they were on their last few years. My S.O. is not confused or way out in left field. I had no idea that, even in the absence of severe senility and very obvious dementia, a person could lose so much mental capacity. I had no idea personality could change so much. Not what is deepest in his heart, but so much of what defined him in the past. I am grateful that he is not prone to depression and is very accepting of not being able to do so much of what he used to enjoy. But I am astonished at how hard it is for him to think through lots of ordinary things . . . how slowly I have to explain little things, so that he can follow what I'm saying. And I think you are right about it being harder for him to empathize or really imagine how this is for me. I can't imagine what it must feel like to be very mobility impaired. I would be so frustrated that I'm sure I wouldn't be too pleasant too be around. Mostly, he is quite pleasant.

I would love to meet others in my position. There's so much that you can't even explain to others not going through this . . . even to people who shoukd know better. A physical therapist came to assess him and was critical of me not making him exercise more. I'm already struggling with him just to get him up to the bathroom or into the shower.

Tisha: I know I have the option you mention. Maybe it will get to be too much, but it's not that bad yet. I have cared for others in their homes right up to the end. That was my job. There really isn't anything he's likely to need that I don't know how to do . . . and am still strong enough to do. My goal is for him to pass away in his own bed, with me right there. The VA will provide just about anything I might ever need, like hospital bed, etc. I've done this before. But I left at the end of my shift, every day, and went home. I'm here with my boyfriend close to 24/7. At least, now, I can leave for a few hours when the attendant is here.

justa: I wish I could find an on-line support group . . . or a group in my community. I do have access to respite care either in a nursing home, or via more helo in the house - if, say, I wanted to go away for a week, or even longer. He's just recently gotten out of a facility, and he's been frail and currently just getting over an infection. So, for now, I'm staying put, as I try to get him more stabilized thsn he's been

wrench: your mother is lucky to have you living there. As you say, at times I feel like a servant.

Trippin: I think you've got it tougher than I do. I must say . . . aren't your older siblings blessed to have you there taking care of mom! You are dealing with a lot of issues similar to what I am, though in your mom's case, the dementia is far worse than with my boyfriend. I hope your sibs give you some support.

Christina: Going to his place every other day would not suffice. But there is funding for more hours of care. My goal is to be able to go home for 48 to 72 hours in a row once a week. That would be huge. I do have to accept that delegating more to attendants means some things won't be done exactly as I would do them. Maybe he and his attendants need me a bit more out of the way, so they can evolve their own relationshios. But it's scary what a low standard these attendants are held to.

Now I have to make a pot of beef stew . . . something the attendant can easily just heat up. I'm tired, but I better get that done.

His behavior, as you know, is the dementia. At this point, with him in a steep decline and you on the verge of burnout, the kindest thing you could do for him is to let his case manager/social worker know that you can no longer devote your life to caring for him and he needs to be in a facility. Then let them take the measures to put him in the facility. His anger hopefully will be directed toward the social worker and once he is settled wherever he is going to be, you can become FRIEND again. And at that point, that's exactly what he will need, a friend.

He will probably perk up with the social stimulation and the staff will know how to redirect and minimize the bad behavior.

I'm not in the USA but have had a Google and came across this resource website based in US:

Alzheimer's Disease and Dementia | Alzheimer's Association

I know it says Alzheimer's but they cover all kinds of dementias.

There is a message board where you can post dementia related queries, one for caregivers, another for people with dementia which your friend may find helpful depending on his stage/abilities.

There is also a tab 'in my area' which you can look up local support/workshop groups.

I can understand it being totally different and much harder to your professional caring career - your relationship is undergoing massive changes and that is a kind of grief in itself.

Take good care and feel free to PM me.

Blessings to you. Hoping this all turns out the way you want it to turn out. I am glad the VA is helping you. MY FIL died 5 years ago and my MIL is entitled to some sort of benefits. She's 88 and their idea of homebound is actually bedbound. She has rec'd nothing in all this time even though we've appealed and appealed. You are very blessed they are so helpful to you. Very blessed.

Hi Rose, First of all, I am in a situation similar to yours. I am 'technically' married to my husband - we have been together for 35 years and he is 16 years older than I am (I'm 53). He is a Vietnam vet. While we are legally married, we have not lived together for about 15 years. He insists upon living alone, and he is quite severely mentally ill (OCD and anxiety), and I suspect that he has some signs of dementia. He FLATLY refuses to seek medical care. We live exactly 1 mile from each other, but he is at my apartment every evening for a few hours, then he returns to his house. I am his emotional caregiver, for sure. I am not yet his physical caregiver (as I was back when we were raising our children), but I doubt it'll be very long before I am. We are close to our two grown children and our son-in-law, but they are all three very busy with their lives.

I have two suggestions, and I hope I'm not repeating others' suggestions:

1. Can you become your companion's official caregiver and get paid for the position? I did that with my mother for some years, many years ago.

2. Is there a caregivers' group you can attend? NAMI has free caregivers' groups in many locations. Also, the VA in most locations have a tremendous number of resources for vets and their significant others...not only medical, but therapeutic, groups, counseling.

I actually just quit a job taking care of a 70 year old woman with dementia. I worked for her for over 8 months, but finally came to the end of my rope when she began threating to kill herself and/or her partner, was throwing pillows around out of anger and hitting herself in the head. I had watched her deteriorate quite rapidly.

The real reason I quit was because her partner just couldn't see how unhappy the woman was in her current environment. She was afraid and angry about what was happening to her. I felt she NEEDED to be in a place where she would be safe and start to begin to accept what was happening to her. I thought being in a home would provide her with consistency and security. I thought the anger could have been coming from her place of fear, if that makes sense?

I guess what I'm trying to say is that there does come a time when the patient needs to be in a facility and sometimes maybe it is difficult for a loved one to see that they would really be doing the person a favor by helping with placement and then visiting as often as possible.

I just told my daughter that I want to be in a facility if I ever become someone other than the loving mother I have been, due to illness. Does this make sense to you? He probably doesn't want to be so disagreeable but he can't help it and perhaps, the best thing for everyone would be for him to be with others who are like him. Anyway, big hug for you!

I totally feel for you in your situation, I had a similar experience with taking care of my mother in law in my home. It took over a year to finally find out that alzheimer's was what we were dealing with in regards to her bizarre behaviors. She became very hard for me to deal with, I couldn't get her to do basic things like bathe, I would find her medicines wrapped up in tissues and hidden in the trash or thrown in the toilet, she was angry and cussed me under her breath constantly, and did I mention she was dirty? I did my very best to deal with everything but was woefully unprepared to care for someone with not just alzheimer's but many other physical illnesses as well. It took my husband stepping in feces in her bedroom to finally get him to realize that she needed to live in an assisted living home. One additional thing that I was dealing with was the fear that my kids would come home alone and find her dead from one of her other illnesses.

Moving her to assisted living was the best thing we did, I am positive it prolonged her life as she was getting the round the clock medical care she needed, as well as, taking her medications regularly. They were able to keep her clean, she ate better and when she was up to it, she had a dining room to eat in with other residents so she was able to socialize in some capacity.

The biggest advantage though was that my husband and my family were able to become son and grandkids again, rather than caregivers. The stress relief was amazing. Their relationships got better, not so adversarial. Me of course, I continued to be the 'bad guy' because I was the one who had to make her get up and go to dr visits and other such things she found disagreeable. She was very much like a 3 year old. I eventually had a mental breakdown due to all of the stress and anger I was having to absorb from her.

I imagine it is easier to handle someone like this when you are not emotionally invested but as a partner/child/family member who becomes a caregiver for someone in this condition, It is truly heartbreaking and mentally/physically exhausting.

I was like you, I didn't want to be the person who made that decision, I had to wait for my husband to make the decision on his own. I had already done research of facilities so when he did decide, we had information on hand. The one thing that made the move easy for her? She was looking in the paper for apartments on a daily basis, we presented the assisted living facility as a 'new apartment' complex. It was a nice place, lots of amenities and if I ever get in a position where I need a facility, I would definitely choose that one.

Best advice I can give? Take care of yourself, limit time spent with your friend if you need to, and be aware of when you are becoming overwhelmed so you can ask for help.

I should have picked up on the clue that I was ready to run away from home and was counting the days as a sign that I had become completely overwhelmed. Much like new moms...I felt like I was supposed to be able to do this on my own and if I didn't I was a failure. That is so far from the truth.

Thanks so much for sharing your situation, which is a lot like mine and apt to become even more so.

The answer to your question #1 is "Yes! - I could become his paid caregiver, either through Medicaid or through the VA Pension for Aid and Assistance. He now gets both. I waive that for financial and emotional reasons . . . and maybe I'm being stupid. I, myself, am now living on Social Security and receiving some benefits by virtue of my being in a low-income category. They're not huge and would probably even be out-weighed by the income I could get as his paid caregiver. But they are permanent benefits that I can rely on. Like: I get a Section 8 housing voucher that I spent about 3 years waiting in line to get. It't just about $200/mon., but I can count on it, probably for as long as I live. He, on the other hand, might give up the ghost two months from now and, then, it might take me years to get back my housing subsidy. When you are poor, it's hard to give up a reliable government subsidy for an unreliable paying job. That's what is called "perverse incentivization" (typically pointed out by Republican politicians.) And it truly is just that.

My second reason for not being paid is emotional. My boyfriend and I have had 32 years of a rather troubled relationship. That's why we don't live together. (For the first 12 years he drank heavily.) I like feeling free to do only as much as I want. And I think he treats me better, knowing I can walk away whenever I want. Me taking money might allow him to sort of see me as his paid servant. I truly want him to be as independent of me as possible, so I am channeling the funds available toward getting him as much "outside" hired help as possible. I love him, but I also want to not be practically living with him. I want my time back more than I want the money.

I know I've revealed a lot here, and I don't mind doing that. I really appreciate the interest shown to me on this thread.

To your question #2: I'm really not aware of everything going on in my community and through the lical VAMC. I think a VA psychologist who has done consults on my guy has told me there is a group. I need to call her and ask about that.

It's a shame your husband won't seek care at the VA. It can take some persistance to get all a vet is eligible for, but it is worth going after. Your husband is not looking ahead to when he will have increasing health problems, as age does bring. There are things he can get through the VA that he might not get through Medicare. He really should get hooked up with both. He's lucky to have you still so interested in him. You know, I thought my situation was rare. The VA psychologist has told me that they have quite a number of vets who are being looked after by ex-wives.

Caregiving is a very hard job for those who are close to the patient. We did it for my G mother. She become demented at the end and it ruined my memories of her. Can you find someone else to do it for you?

What you've explained about your financial situation makes perfect sense. It's easy for outsiders to look at your situation and see it as black/white, when truly there are many shades of grey.

Please do give the VA group a try. Years ago I received therapy (free) through the VA and also attended a group - both were outstanding.

Thank you for your words regarding my husband. He does see a pdoc through the VA & the pdoc is forcing my husband to get hooked up with VA counseling. He also receives some disability through the VA. What he refuses to do is seek medical care (the physical part). He's absolutely terrified of seeing a doctor...won't deal with it...preventative tests and such he should have had years ago, and certainly should be having now, are just not happening. He exercises and prays, and insists those two things will keep his health sound. *sigh*

I actually don't mind the caregiving. When I started this thread, I was upset and demoralized by my friend snapping at me too often in one day. But that was mostly just the both of us having a bad day. It's not like that every day. We have funding from the VA to hire caregivers. Plus Medicaid provides home attendants. Finding help that's really competent and who are nice to have around is no easy thing.

The attendants that come from Medicaid contracted agencies have no training. If they had any real skill, they could work under the table for more money than the agencies pay them. The agencies take most of the Medicaid money for overhead and profit and pay a pittance to the attendants.

With the VA money, I can hire people directly, and I'm looking on line at sites like care.com where independant caregivers advertize. They charge a good bit, and there is absolutely no way of knowing if anyone is any good, other than to have them come and work a few days. I'll have to just take a leap of faith with that eventually.

This is a lot harder than, say, hiring a babysitter. At times, that's all he needs . . . at times. Then, at times - and when is unpredictable - he needs real hands-on care. He's mobility-impaired, so just the physical challenge of moving him around takes a combination of strength and skill. Then, top it off with him having just enough dementia to not always be as cooperative as one would wish, and you have a job that actually takes a certain amount of genius to carry off.