Newbie Needs Advice On Supporting Father

[mother-to-be]

Hello!

My father was diagnosed with ALS on June 16, 2011. Onset of symptoms for him began in his right hand in mid-January and have progressed relatively rapidly it seems to me. He is still able to walk, but is just barely shuffling his feet. He's had significant atrophy in the backs of his legs in the past two months and is finding it very hard to get up from a seated position. (Thank God for the lift chair!) He doesn't seem to have much bulbar involvement at this point apart from a hoarse quality to his voice and very slight slurring. So far, he is not having trouble chewing or swallowing, and we are so thankful for that! However, he is having severe gastro issues (alternating between diarrhea and constipation - not sure if this is related to the ALS?) and the thermal regulation issues that seem to plague so many PALS (he sweats profusely and is hot in his upper extremities, but his feet freeze).

My father lives alone 1 1/2 hours away from me, his only child. He does have two wonderful caregivers that alternate weeks with him during the day. I have tried to encourage him to come live with my husband and I, but he wants to stay in his home. I talk to him everyday, and I go up on the weekends to visit and do what I can. I am 9 mos. pregnant with my first child, so it will be more difficult for me to make the trip every week once the baby arrives at the end of the month.

I feel so helpless. I just don't know how best to support him. He is so depressed, and I can't blame him. There is absolutely no comfort with this disease! It's difficult for me to remain positive and keep a good outlook when I visit and call, but I feel like that's what he needs in order to keep from getting sucked too far into his depression.

I apologize for the long-winded post. I guess I'm just wondering how everyone else does it? My father and I both are strong in our faith, and I know that God will see us through, but this is so difficult. We lost my mother three years ago, he lost his sister less than a year ago, and now here we are. It's hard to understand.

Thanks for listening.

 

[abbas child]

I'm very sorry your dad and you have this to deal with. A couple of thoughts are to suggest he begin adding psyllium (metamucil or plain), as it helps with both constipation and with diarrhea. Benefiber may also help, in tweaking it. Just ask him to begin with lower doses, and increase slowly, and also drink water--enough that the psyllium doesn't turn into concrete.

When I was up in the wheelchair, I wore sheepfleece year round on my feet (Uggs boots). Feet hanging down can't move blood up the atrophied legs, so by settling in his feet, they are cold, becoming dark red and swollen with time. Raising his legs for as much time as possible would help.

By progressing this rapidly, your father hasn't had time to deal with each new hit--it's hard when progression is slow. He would be normal in needing medication for depression and anxiety. And, he's blessed to have your phone calls and love. Hang in there.

 

[brooksea]

I'm very sorry about your father. I know it is heart wrenching.

You mentioned two caregivers. It will get to the point where he will need help at night and there is danger of him falling. Can those caregivers start alternating shifts (night/day)? I don't know if they are friends or if they are paid caregivers from your post. But, I want to tell you, unless you yourself have help with your baby or your father, you will find it very difficult to care for your newborn (or any kids) and your father as he progresses. You will be up all hours with your newborn for a long while to come. Your father will also need care during the night, as well as the day.

It would probably be a blessing to you both, if he had outside caregivers. That way you could spend special, quality time with him and bring the little one for him to see. I'm sure he would so appreciate it.

These are just my thoughts, from my perspective.

 

[mother-to-be]

Abbas Child and Brookesea, thank you so much for both of your replies. I desperately want to be there caring for my father, but I know that in the months to come I am going to be completely immersed in the care of my baby. The caregiving arrangement right now is two sisters (paid caregivers that have been caring for my 97 year old great aunt on the weekends) that alternate weeks, and it has helped immensely, but I know it is only a temporary solution. He will need help at night (turning in the bed, even with his nylon pajamas, is difficult), and soon, I know.

Abbas Child, yes, the dietician at Emory recommended adding psyllium as well. The constant fluctuation between the two extremes is just another horrible gremlin that he does not need to have to wrestle with. I'm hoping this will help regulate him some. I'm sure he's not getting adequate fiber intake right now, not so much because he's unable to chew or swallow at this point, but because his appetite is just non-existent. It's hard for him to even think of things that might taste good to him, and when he does think of something and gets it in front of him, he finds that he just has no taste for it. I'm guessing this could very well be from the anxiety/depression, but I'm also starting to wonder if it's another part of the disease.

We will have to try the Ugg boots or something similar for him. He does spend most of the day with feet up in the lift chair, with socks and a blanket, but the blanket is a little too much on the legs since the rest of him is sweating.

Brookesea, I so hope that when the baby arrives, my father and I will both be able to enjoy a little piece of heaven!

 

[brooksea]

I hope you will keep us updated. It sounds like you already know and are, perhaps, prepared for what is to come. Just know that we will be here to try to help you if you have any questions.

Wish you well with the birth of your child! Sending you prayers and hugs~

 

[dian_na]

Mom likes those micro fiber blankets they are warm yet light weight, to much weight makes her feel tied down even though she can't move, the extra weight is sufficating to her, even on her legs.
The nylon pajamas need to go away, They cause friction and heat and make produce bedsores and chaffing in undersireble areas. Cotton is the best choice.
Psyllium is an excellent idea and actualy over looked by many caregivers as an alternative. You can find it in the laxitive section at the stores. It is also used to bulk diareaha, so its not truly a laxitive in how we might think it is, its providing fiber and bulking the diareaha, it takes care of both, I have used it with my mom many times. Theres no true laxitive thing that happens it simply provides fiber and a ways of soaking up liquid.
I care for my mom alone and your wise to seek alternative ways to help in the care of your dad. Fisrt have him sign a power of atty for you so you can do things for him. If you don't have that no one will talk to you hardly. In Georgia find information through the senior serviices. Also is your dad a vet? There may be some additional help for him especially in remodeling a home to meet his needs, a vehicle to get him around ... etc

 

[Barbie]

I agree, you should not take on a newborn and your rapidly progressing dad unless absolutely necessary. Keep up the phone calls, and maybe reach out to the caregivers too so they can tell you what your dad doesn't. I am sure some anti anxiety or depression meds would help him adjust to the terrible changes. You are helping him by joining this forum and learning as much as you can. You are a good daughter!

 

[HelenL]

Mother-to-be, I'm so sorry that instead of focusing on the joy of your first pregnancy, that you are dealing with your Dad's illness. Remember to take a bit of time for yourself and your hubby to spend with your baby.

Do you have any other relatives/family friends that can step up for your Dad for the first few weeks after your baby's arrival? You'll never get that time back, and I'm sure your Dad will understand that you can't be in 2 places at the same time. (And trust me, sleep deprivation can be unbelievable the first few weeks so you wouldn't be much help anyway) At some point after it all settles down, you may need to move him in with you, unless there is someone living with him. The other option would be for you to move in with him for a while, but that would definitely be harder on you and your husband... if space is an issue in your home, the baby can sleep in your room for the first year.

I'm so sorry that you're on this forum, but know that the people here will help you with lots of hugs and great advice.

 

[artist09]

My Dad was also diagnosed in June. June 17th, my daughter's first birthday. I have 3 kids and my sister lives 2 hours away and I'm 45 minutes away, so most of the caregiving falls on me. Everyone else is right. Take care of yourself and your baby first. Otherwise you will not be able to care for him. I have had a long, difficult summer, I've battled anxiety and am now on anxiety medication. This diagnosis has put a strain on our marriage as I am trying to balance it all....three small kids...husband...and ailing father. So, I can somewhat relate to your situation. I am sorry your fathers ALS has progressed so rapidly. My father's started in his shoulders and then down to his hands and has been confined there for the moment. This is almost all I can bare and I can't begin to imagine all you are going through being an only child, pregnant, and so far away. Your hormones will be raging after the birth of the baby, so expect lots of emotions to unveil themselves that may not have to date. Be sure to seek help if this happens. It is OK to see council for this. Hopefully you have a supportive husband. I pray that God gives you the strength you need. I'm saying a prayer for you now.