Physical and Mental Exhaustion

[soonerwife]

I know PALS are not supposed to fall... But last night my PALS was in the floor 3 times. I hate this d*** disease.

He absolutely won't use any assistive devices until absolutely necessary. This morning, I told him... You have to make some changes. My back is really hurting.

I must learn to use the loaner hoyer TODAY!

This last week I feel like I am in some sort of nightmare and can't wake up.

He is now sitting in the lift recliner that he refused to use.... He used the pwc to go from bedroom to office. He used the transfer board last night and this morning. Today I will give him options that will save my back..

I feel like I am holding my breath. Wish me luck and thanks for listening!

 

[jayswife]

Unfortunately it seems to have taken some falls for him to realize that he's needs to use the assistive devices. I'm sorry that your back is hurting and I hope that you can find some relief. I understand the feeling of living in a nightmare, I feel that myself quite often. I'm thinking of you and hoping things will get a bit easier and that he continues to use the devices. Good luck with learning to use the hoyer lift. We need one as well so let us know how it goes.

Amy

 

[KateEmerson]

I totally understand what you are feeling and going through. We were there last year, I can't count the number of falls we had before my PALS would agree that we needed to use the next piece of equipment. Thank goodness he never got hurt. I always tried to think about how hard it must be for him to lose the ability to do something forever and it helped me be less frustrated. The one line I drew was my back. If I could not help him up without straining my back, he had to wait until I called someone to help him up. We are very fortunate that my brother only lives 5 minutes away. Thinking of you and your PALS, KATE

 

[soonerwife]

Thanks guys! I don't think he would give in even today had I not insisted. He still walked to the bathroom a few minutes ago with nothing... UGH!

Part of it is that his brain isn't working properly. I don't think he has the cognitive function to think about what he needs to do.

I feel horrible for him and have not lost my patience yet.

Amy, we received the hoyer lift from the loaner closet at the mda while we are waiting on ours to come. I am hoping we can use it. The areas that he usually falls in is pretty small areas so we will see.

Thanks for listening guys! Thank goodness I have friends here who understand.

Kim

 

[KatieNBoyd]

Sending you strength in your heart and your body.

Kim your husband and mine shared similar backgrounds. Stubborn being a big one. Jon's mind was not right as well (you know this) I ended up putting the potty chair next to the bed. I told him if he wasn't going to use the walker to get into the bathroom he would have to do his business right there in the bed room. I remember the look he gave me (it makes me smile now). Our home would not take a Hoyer lift or a PWC so every time Jon fell it was just me or some help from our 14 year old daughter.

Give him choices. At least that worked for us. They are losing the individuality but still need to feel empowered some what. We used a variety of things, Walking sticks, the roller walker.

Feeling your pain. Hugs
Katie

 

[soonerwife]

Thanks Katie! He was using the walker last night at least one of the times. He has cane, walker, rollator, pwc, rolling shower/commode chair.

It's just hard when it's the middle of the night and he gets up and I'm asleep and the next thing you know, he is on the floor.

Today I am getting a handheld urinal. Told him a bit ago, you can use that or the rolling chair during the night. He said ok but he always says ok and then does something else...

 

[4tloml]

I'm so sorry you are going through that, Soonerwife. If he is suffering cognitive decline, he may be unable to assess the risk/reward to his behavior. That happened with my PALS (husband) and it took a near-death experience for me to realize it. I wanted so badly to encourage his self-determination, but ultimately, I had to admit that it was more important for me to make some of the decisions to keep him safe. He simply couldn't think through the risks, so it became my job to do that for him. He accepts the tools now that help us both, even though he resisted some at first. It's a really hard transition to move from following their lead to taking charge, but as caregivers, we sometimes have to do that to keep us both safe.

 

[Dave K]

He absolutely won't use any assistive devices until absolutely necessary.

Typical. I know it doesn't help to say it, but it's just typical. For the CALS, it's infuriating and heartbreaking. If there's a way to see a bright side to this problem, I never found it. Just gotta get tough, I guess.

 

[affected]

I so feel your pain. I am just so relieved he wasn't seriously injured, I wouldn't wish those experiences I had on any PALS or CALS. Watching Chris in such pain, the ambulance waiting, the horror of an emergency department with a PALS, and the healing process that never fully heals, and the pain.

And yet, with cognitive impairment they cannot assess these risks.

The only way my Chris stopped falling was when he literally could not walk anymore.

While you can't actually restrain him, you must completely stop attempting to get him up off the floor. Call the fire brigade or other emergency service every single time he falls, and maybe it will help him to realise he can't just fall and make you fix it.

The urinal is a great help - I did have a lot of trouble getting Chris to use one but when he did I know that even he was amazed how quickly a simple task of toileting was completed and with no real effort.

I truly hope you can solve this for your own sake as well as his, and before a serious injury happens.

 

[gooseberry]

Remember you can not prevent it. These are his choices. All you can do is tell him what you are capable of and are willing to do. For example, you will call 911 to pick him up because your back is very strained.

 

[mommychops]

You have gotten lots of valuable advice here. i would add that i used a 'weight-lifting belt' ANY time i have to move my PALS. he needs to be rolled over several times during the night, and i wouldn't even try it without the belt. it stays on so tightly that it's very difficult for me to remove the velco straps.
AMAZON:
Fire Team Fit Weightlifting Belt, Olympic Lifting, for Men and Women, 6 Inch, Back Support for Lifting
by Fire Team Fit
$ 33 99 $49.97Prime
Some sizes/colors are Prime eligible

 

[Jlynn]

Soonerwife....I can so feel your pain. Sometimes I feel that the only reason I have been able to put one foot in front of the other is because of all I read here. We really are all on the same boat. My brother has moved in with me so that helps a bit rather than doing all the running back and forth. I will get equipment such as a lift chair and power wheel chair and it sits for a while and he only starts using it when he absolutely has to. Once he starts using it then he continues with no problem but it's just getting to that point and giving in to it. The physical and mental exhaustion is unreal. Nothing I have ever experienced. Right now we seem to be on the upswing and things have settled down for the moment. I hope the same for you Soonerwife. Very soon. Your husband is so very lucky to have you. Big hugs to you.

 

[Narrowminded]

Sooner - many huge hugs. It took Brian a nearly disastrous fall before he would use equipment as well. After that he moved easily to the next step, however at the time there wasn't any cognitive impairment to fight with as well. You are definitely in my thoughts. It's a rough stage to get through. As exhausting and mentally fatiguing as what we are dealing with now, at least we are not fighting those battles any longer.

This disease is rough, and we all go through some fashion of these battles. This place has also helped me keep my sanity at times. Just knowing there are others out there who totally get it is huge. Just keep posting and venting and encouraging one another, it's all we've got.

Hugs,

Sue

 

[pittsburghgal]

I can totally relate to this. My Frank refused to use the platform walker we had and fell multiple times, always saying that the walker would not have prevented the fall. It was not until he had a serious head injury with a brain bleed from a fall that landed him in the hospital for 10 weeks and in a coma for 8 days that he finally accepted the fact that it was not safe for him to walk on his own. When he was discharged from the hospital he was now in a wheelchair.

Now he is fighting the use of the hoyer lift, saying that he doesn't need it yet. I am always dealing with muscle aches and intermittent back pain and at our last ALS Clinic the physical therapist told him that we needed to use our hoyer lift. She said to him that you don't want your wife to get hurt and he said that he didn't care. This was so unlike my husband that I realized that there must be some ALS related cognitive impairment at play here, but it was so hurtful to me. I think we are close to me stating that I won't take care of him unless we use the lift but I really hate to do this and I'm sure he won't believe this anyway.

Sharon

 

[affected]

Sisters (and brothers) in pain xxx

When the brain is affected and there is no empathy we as CALS are truly at risk. We love our PALS and we want to make their time on earth the best we can. We can find ourselves agreeing to things that are not safe because we don't want them angry with us, and we can be accused of some truly awful things.

This puts us in a paradox situation and each of us has to make our own decisions and really right and wrong begin to lose all meaning and relevance. Only you know exactly what is going on in your home there, so only you can make any decision or choice.

When there is lack of empathy, anger and paranoia you are never going to do right no matter what choices you make, so focus on what you know in your gut is the best decision and make it. Yeah it's not always that easy, some of these decisions are hard to make and really really hard to stick by when they accuse us of terrible motives.

But you have to survive and your perspective on what is happening is likely to be so much clearer.

I can only say that every year since Chris passed, if I reflect on these kinds of situations I only see them with more and more clarity and realise how messed up his head was from the FTD and how much it impacted on everything happening, but also on what I was living inside myself.