Marlis as always I admire your courage ans sensible loving approach to charlie's care.
I think the important thing to determine before making a decision about anything is whether it will do any good to continue or will it be harmful to stop.
from your description Charlie is soonapproaching the stage wher you will have to take over most of his personal care. It is simply becoming too exhausting therefor impacting the quality of his life.
I strongly disagree with the suggestion that something is for the loved ones "own good" This is very different from preventing them from harming themselves. I would not give a diabetic ice cream for breakfast but if they were in the active phase of dying, I would feed them whatever they asked for.
Charlie is limited now and has become so quite quickly in his activities so why struggle. he has made sufficient progress for his needs and presumably is not experiencing pain so why run the risk of dragging him out in inclement weather to contact people who may be sick and put both yourselves at risk of crashing the car on icy roads. My view is it is all a matter of checks and balences.
I agree with whoever sugested a rolator for Charlie rather than a walker as long as he can still figure out how to use the break. They have a nice seat to rest and although not designed for transport you can pull the patient along behind you for a short distance if they really can't walk any further. They fold up nicely and are quite light to put in the car. They cost around $100 new but can often be found used reasonably cheaply. I found one at a garage sale for $30. i can still manage with a cane or shopping cart but I can see the time comming when I would like to use it. I hat trying to shop in one of those electric scooters and being pushed around by hubby in a wheelchair is a divorce waiting to happen. So hugs to you Marlis keep those fingers on the keyboard. Now if you broke your hand I certainly would make you do the PT because it would be so depressing for you not to be able to write. You are so determined though you would probably be using your toes in not time!

I'm not sure that I want to give up quite yet in coaching my partner to take his medication because it has helped him a Lot. When it no longer seems to be working then I would just let it go

I have gone through this frustration trying to keep my mother active using her hand ever since she developed a problem in lifting her hand. I nagged and took her to Velocity Sports Medicine & Rehabilitation located on the southeast corner of Mississauga for physiotherapy a while, which she followed reluctantly through the exercises. A few months ago she actually recovered and now she says she is thankful to me.But I give away all thanks to the physiotherapist . I understand how you are feeling about Charlie. A little pressure will let him have a new life.

Oh my, no offense taken. I know we all just do the best we can to get thru each day and take one day at a time. Caregiver is the hardest job I have done in my life and I appreciate everyone's support and comments. We all learn from each other.

Patrice2oz - I hope you realize I was not referring to your situation. I was suggesting there are ways to help re-direct the person's understanding which help to avoid adding more stress into the situation, I was commenting on a blog, and that I might offer a different approach does not mean that I am being critical of anyone. One can certainly understand how you feel, and it sounds like you are doing the best you can, as we all are. -My best to you and yours.

I do agree with you but perhaps since my journey with dementia has already come to an end, I guess I think life is too precious and short to have the types of battles as mentioned in the question above. I just think there are things that we as caregivers can do ourselves and we have to pick and choose our battles to make life more pleasant and comfortable for our loved ones. I am taking care of my 85 year old father now , copd, diabetes , heart problems and mobility issues. We are going thru the PT route again. 2 outside sessions per week. Some days he just doesn't feel like doing his exercises. I have come to realize that exercising 5 out of the 7 days is better then nothing. My nagging to get him up on some days only upsets me and him and I have learned to let it go. Would I compromise at this point with him not taking his medicines? Absolutely not. VWould I like him to exercise everyday, absolutely, realistically is it going to happen, no. Thru my journey with my mom I have learned that everything is not going go down as I would like and to just accept some things in an effort to keep the peace. I remind myself everyday that my goal as a caregiver is to keep my dad safe and feel happy and loved.

Considering that a person with dementia has a brain-problem with decision-making it is wonderful if and when they begin to feel safe to surrender to times when they need your help with decision-making. For example, when a person who would not normally want to get sick begins to refuse help it's perfectly ok to remind them, "Ok, but we need you to do (this or that) so you won't get sick, right?" It reminds them of who they really are and if they can come back to be with you in that moment they will.

I am not debating or disagreeing but we as caregivers also need to keep in mind that is not only about what we want. We all need to truly listen to the wants of the person who we are caring for.

I am of the mindset as long as a person is not in need of hospice don't give up on anything. Depending on where you live you may be able to find a Rolf Structural Integration practitioner to help ease the tightness in the shoulder. I suggest to schedule his doctor visits, and, this may be hard at first, I suggest to begin talking to him and treating him as though he is the "man you take care of" and then he may begin to respond and allow you to just be his care-giver in those moments. On some level many folks really want to see that their needs will still be taken care of even when they can no longer be in relationship with you. This can be a great gift to his peace of mind as his dementia progresses, especially if he is otherwise healthy. I also disagree with the "one size fits all" notion of feeding a person anything they want because iI they are not already ill, an illness will soon develop so keep him healthy and consider that you both will then still be able to enjoy some of the sweetest moments in this stage of his life together.

I have had two frozen shoulders and they are VERY painful. I had to get cortisone injections in mine to even begin physical therapy, so I can imagine what he is going through. I am of sound mind and it took a Lot of endurance to undergo physical therapy. I'ts painful. I read that sometimes they have to sedate the patient to manipulate the shoulder. It's that painful. There is no way I could have done it awake without the cortisone injection. That really helped. I realize that cortisone and dementia don't mix, but I would discuss the risks with a doctor who knows about this issue. Good luck. This is a terrible situation. I can see how you may need to stop pushing some kind of treatments, but with the frozen shoulder, it's not just limited movement....it's painful.

Patrice2oz, good point about medicine.... I really think we are over medicating our elderly parents/spouse.

I know for myself, I stopped taking some of my meds... I just didn't care... I didn't like the side effects which in turn needed another med to fix that side effect... which in turn caused another side effect.... oh, you get the picture :P

Forgot to mention the homebound doctor also went over all MEDS and stopped some. One of which was namenda because she said it is so expensive and mom is no longer getting a benefit by taking it.

The ice cream for breakfast is exactly what our doctor said. It does have some nutritional value and it is not worth starting your day off on the wrong foot.

Samara, I liked it when you said "Let them eat ice cream for breakfast and watch TV all day if they want, it's their choice". I agree, I believe once someone reaches a certain age, they can do what they want, when they want, as long as it is safe.

My Dad [93] is terrible about doing exercises at home... he does much better being in rehab. As for a walker, I got my Dad a rolling walker which has a hand brake and seat, he loves it. It has made a world of difference for him. He's on a roll now, Mom can't keep up with him :)

Thank you for raising this question. We try to postpone the inevitable as long as possible but can avoid for only so long before it adversely affects the quality of life for those we care for. My mother had always been a bit of a hypochondriac but when she apologized: "Sorry I can't perform." in regards to her therapy I realized she was just too tired to continue.
Most in the medical professions are of little help because their incomes depend on the bilking of Medicare and supplemental insurances. It seems as if they will drain every ounce of life out of a patient if there is some profit in it.
After recently having a meltdown at the hospital and referring to those professionals as Medicare money mongers operating a geriatric puppy mill I was contacted by the "head" of Geriatrics who informed me my mother should have been in Hospice long ago. This only confirmed my suspicions.
Please put yourself in the shoes of those you care for and show enough respect to allow them to pass on without being tormented by those who have "the best intentions".
When I decide enough is enough I pray someone will be kind enough to let me go and not keep me here against my will. There are times when this is the most compassionate and loving way.

My mom's doctor gave her a referral for PT, vertigo, but also stressed it would do little good to go to the appointments if she would not also do the exercises at home.....I am so thankful for those wise words. The last thing a caregiver needs is to take their 90+ y.o. parent three times a week through city traffic, in and out of the car, and sit there during multiple times....with no progress, because they won't do the at-home work. There is definitely a point of declining return on investment. For my parents, I have limits. I can't waste time on anything useless--I'm too busy with the other must-do tasks.
Let them eat ice cream for breakfast and watch TV all day if they want, it's their choice, if they want to choose differently then I will help, within the amount of time I can be available.

I am in a similar position. My husband is farther gone than yours. I have to dress him, shave him, brush his teeth, comb his hair etc. He will lose his prescription coverage of Namenda in the new year. They told me no insurance co. is covering it! Is this true for the rest of you out there? I am opting to stop giving it to him as I don't see any benefits of it anymore. He continues to slide downhill. All he wants to do is sit in front of the TV and have me put in his same favorite DVD's every day all day long. I know the words to every movie! Am I wrong for not wanting to pay over $450 every month for Namenda? But I do agree with what you are doing. It isn't worth it to upset the person so much that they are miserable! They deserve to have a peaceful day for the rest of their time here with us! And we deserve a little peace too.

I also was faced with this decision however my mom was not combative. My mom was a breast cancer survivor. When it took 3 technicians to hold mom up I said this isnt really worth it and if she had cancer I wouldn't put her thru chemo and/or radiation so we chose to stop those appointments. Same with the heart doctor. Took us longer to get ready, park the car, get in office, we were in there 10 minutes and doctor would say see you in six months . I decided to get in touch with a doctor who only treated homebound elderly and this made my life so much easier. She came once a month. If she thought mom sounded congested, she would schedule an X-ray to be taken in her wheelchair at home. If I felt mom was getting sick, she would have the nurses come out from a local home nursing company. This decision to switch to a homebound doctor was truly a life saver for both me and mom. You can get referrals for these doctors from a home health care agency or your local hospital .

very understandable and I would think if he is not in pain with his arm and limited to what functions he can do, I would just stop the therapy. He is not doing them (exercises) at home and you can't force someone to do something if they don't want to. As far as the dermatologist, I wouldn't bother either with that. unless there is a leasion (spelling) that is festering or oozing, I would let it be. And maybe you could find a better walker at a drug store place or medical place (you could claim on taxes) that he could handle better. best of luck

It can be taxing to prepare for these appointments that we assume are for their good. We think we are doing the best thing but sometimes the cure is worse than the bite! Both my husband and I suffered from a frozen shoulder at around the same time. Doing certain movements, especially fully extending the arm overhead, was very painful. He went to therapy, learned to do his home exercises which he did diligently, as well as taking Advil. I went to therapy also but didn't do the exercises as I should have. What's so funny is that both of our shoulders cleared up about 18 months later, no matter what we did or didn't do. Now I'm not advocating not doing the exercises but perhaps we shouldn't get too aggravated when they resist.

Marlis, we probably all go through this when we are taking care of headstrong people with dementia. We know it would be good if they do certain things, but getting them to do it is nearly impossible. We can nag, plead, or try to boss, but it doesn't work. They say that they don't feel like it and they'll do it later, but later never comes. Finally we come to the point that we accept that they are not going to do it. Other people may tell us that we really should make them do it, but they aren't walking in our shoes.

I go through this frustration trying to keep my mother active and walking. I nagged and took her to PT for a while, but she wouldn't follow through with the exercises. A few months ago I finally accepted that no matter what I did, she was going to do what she wanted. I had to try to make peace with that. I do feel like a bit of a failure, since I know that she can do more. But I realize that she has the right to live the rest of her life in comfort, rather than have me push at her. I understand how you are feeling about Charlie. We reach that point where it is about letting them enjoy their life as much as possible on their own terms. I guess we could call this palliative caregiving. I think it is a good thing.

fivewishesonline.agingwithdignity

This is so well done, Marlis. I am in a similar dilemma.......so I can identify a bit. The downright stubbornness is downright agitating, and leaves us with so many unanswered questions.

This is so well done, Marlis. I am in a similar dilemma.......so I can identify a bit. The downright stubbornness is downright agitating, and leaves us with so many unanswered questions.